Page 1

Kids’ Cancer Pages National Childhood Cancer Directory Fourth Edition

Visit JoyRx.org for a PDF of this Directory


Kids’ Cancer Pages The National Resource Guide for Families and Caregivers of Children and Teens with Cancer

A PDF of the Kid’s Cancer Pages can be downloaded from JoyRx.org

Fourth Edition Visit JoyRx.org for a PDF of this Directory


About the Children’s Cancer Association Children’s Cancer Association (CCA) is a national leader providing free, innovative programs of JoyRx and has connected hundreds of thousands of children, teens, and their family members to the power of hope, comfort, and happiness in the last two decades. CCA didn’t start with a foundation, it started with a family. One who faced its own battle with serious pediatric illness in Portland, Oregon. From that experience came a passionate focus on the moment, and a commitment to deliver immediate help to kids when their need is the greatest. We prescribe joy. CCA knows that in the fight against devastating illness, joy is often forgotten and something every child deserves. When seriously ill children, teens, and their families need more than medicine, CCA’s innovative programs create joy one moment at a time. Every day brings new requests from families in need. CCA receives no federal or state funds. Every dollar received by CCA comes from individual donors, corporate support, and foundation grants. For each dollar donated, 79 cents goes directly to our programs. You can help us deliver the healing power of joy to even more families by contributing today at JoyRx.org. We also look to our friends and community to help us keep the Kids’ Cancer Pages a vital and up-to-date directory. Please contact us to recommend new organizations you think would be valuable resources or to suggest edits to this fourth edition. To learn more about CCA, please visit JoyRx.org. You may also call our office at (503) 244-3141 Monday – Friday, 8:00 am – 5:00 pm PST. Written correspondence can be sent to 1200 NW Alexandra Ellis (born 1989) drew Naito Parkway, Suite 140, Portland, OR, 97209.

CCA’s gleaming heart shortly before her death in 1995. Every day, Alexandra’s strength, bravery, loving heart, and laughter lives on in the work of CCA.

iv |


Children’s Cancer Association’s Programs and Resources CCA’s Kids’ Cancer Pages directories are provided free of cost to every pediatric hospital in the U.S. The directory is used by social workers and hospital staff to help families identify valuable resources. Copies with noted recommendations are then provided to families to help them in their journey. MyMusicRx.org, the only online music medicine program of its kind, is available to seriously ill kids and teens – anywhere in the U.S. and Canada – on any given day, 24/7. MyMusicRx enables members to play and download free music games, explore digital instruments, record original music, and watch exclusive video greetings from their favorite artists. MyMusicRx can be found on the GetWell Network in a growing number of pediatric hospitals across the U.S. CCA’s flagship MusicRx® program soothes and rejuvenates hospitalized children, teens, their family members, and the medical professionals who care for them by infusing the hospital environment with the healing power of music. MusicRx features state-of-the-art mobile carts loaded with specialized instruments for all ages, interactive technology, iPods, iPads, karaoke, and recording equipment. CCA’s music specialists and trained volunteers provide tailored music medicine experiences to kids, based on their requests and how they are feeling at that very moment, in the Portland, Oregon area and in Los Angeles, CA. CCA’s award-winning Chemo Pal® Mentor Program gives kids and teens a trusted adult friend to look forward to during treatments and someone in their corner when they need it most. Having introduced Chemo Pals to nearly 1,000 kids and teens in the Portland area alone, CCA knows the powerful impact that mentoring can have on a child’s quality of life. CCA’s Link program is a community network of caring people and organizations in Oregon and Southwest Washington uniting local families with non-occurring essential needs and connections to local and national resources. CCA’s Link program also helps local families by saying “yes” to a child’s wish when their eligibility falls outside the parameters of other organizations. The Alexandra Ellis Caring Cabin™ provides local, eligible children facing cancer and terminal illnesses and their families with an extraordinary place to retreat, relax, and create once-in-a-lifetime memories. Located on 24 private acres along the Oregon coast, this spectacular setting features a beautiful sand beach, massive campfire, and serene lake for kayaking. The Alexandra Ellis Family Resource Center, operated in partnership with Randall Children’s Hospital at Legacy Emanuel in Portland, OR, provides free, 24/7 access for families and patients, specialized health information, books to loan, and resource directories. Through the Center’s computer bank, families stay connected to friends, work and the outside world during their child’s hospital stay. Hope for the Holidays delivers compassion and joy during the holiday season to families recommended by hospital social workers who are emotionally and financially struggling to care for a child with a serious illness. This local community effort pairs Oregon and Southwest Washington families with sponsors who provide the family with gifts, essential needs, and the ability to take a deep breath, relax, and enjoy the holidays.

|v


LEGAL DISCLAIMER This directory is provided for informational purposes only. The Children’s Cancer Association (including its boards, employees, supporters, sponsors, foundation partners, or affiliates) does not recommend, endorse, or support any resource listed in this directory or the materials, information, advice or recommendations they may provide to the public. The resources listed in this directory and the recommendations or materials presented by the respective organizations should not be regarded as a substitute for professional medical and/or legal advice; it should not be relied upon for any reason. Anyone reading this directory who is seeking medical advice or expert interpretation is urged to consult with a physician, medical professional, attorney or other professional who is wellversed in the matter of concern. It is the reader’s sole responsibility to discern, evaluate quality, value, validity, expertise, and/or the appropriateness of the information provided in this directory or by any organization listed in the directory. © 2013 Children’s Cancer Association ALL RIGHTS RESERVED No portion of this publication may be reproduced, stored or transmitted in any form or by any means – electronically, mechanically, or by photocopy or recording – without prior written permission from the Children’s Cancer Association. It is our policy not to share any photos with Third Parties. All photos in this publication are solely the property of the Children’s Cancer Association and are not to be used for any reason. Using any of the photos in this publication may violate federal patient privacy and copyright laws. ACCURACY When this directory was published, all resources were derived from the most current and authoritative publicly available national sources known to the author. If we inadvertently missed an organization or resource and/or an organization has changed contact information, please email Office@JoyRx.org.

vi |


Table of Contents WHERE TO BEGIN YOUR SEARCH.............................................. 1 INFORMATION AND RESOURCES..... 5 Disease-Specific Resources.............................6 Bone.............................................................6 Brain.............................................................6 Breast...........................................................8 Endocrine....................................................8 Leukemia and Lymphoma.........................9 Liver...........................................................10 Lung...........................................................10 Nervous System........................................10 Ocular.........................................................11 Oral, Head, and Neck................................11 Skin.............................................................12 Soft Tissue Sarcoma..................................12 Urogenital..................................................12 Rare Pediatric Conditions........................13 Support and Counseling................................15 Pain Management..........................................21 Disability.........................................................23 Transplant and Donor Programs...................27 Home Care......................................................29 Reference and Accreditation.........................31 Complementary and Alternative Medicine.. 33 Intercultural Resources..................................35

Resources with this symbol are available in Spanish

AID AND ASSISTANCE....................37 Financial Assistance.................................38 Fundraising...............................................43 Employment and Legal Assistance.........44 Insurance and Medical Assistance.........45 Prescription Assistance ...........................47 Travel and Lodging Assistance...............48 Air Transport.........................................48 Ground Transportation.........................49 Lodging..................................................50 Educational Financial Aid........................51

CHILD, TEEN, AND FAMILY RESOURCES........................54 Wish Fulfillment Organizations...............55 General Wish Fulfillment......................55 Wish Fulfillments for Young Adults........57 Camps and Vacation Retreats.................58 Community Forums and Friends.............61 Child / Teen Support Forums ..............61 Sibling Support Forums........................64 Parent Support Forums........................64 Odds and Ends......................................66 Life After Cancer.......................................69

SUPPORT FOR END OF LIFE.........74 Compassionate Care Resources..............75 Grief and Bereavement............................77 Funeral and Memorial Services...............81


Notes:

viii |


Facing a diagnosis of pediatric cancer, families can be overwhelmed by fear, confusion, questions, grief, and hope. This section offers national resources that provide comprehensive information and additional links related to your child’s cancer, treatment protocols, support, and education. These may be good places to begin your journey.

Where to Begin Your Search

Where to Begin Your Search

Where to Begin Your Search | 1


Where to Begin Your Search These national resources offer excellent links to begin your search. American Cancer Society

250 Williams Street Atlanta, GA 30303 phone: (800) 227-2345 fax: (404) 325-2217 contact: nursejvd@aol.com cancer.org

A nationwide, community-based, voluntary health organization that assists people with cancer through research, education, advocacy, and service. The information line can help: answer questions and offer free publications regarding diagnosis, treatment, and nutrition; provide information and counseling for the cancer patient and the patient’s family; provide information and guidance concerning services, such as providing transportation to and from a doctor’s office, clinic, or hospital for treatment; arrange for lodging; help with home health care, blood programs, assistance with employment problems and social work assistance.

Cancer.net

Beauty is whatever gives joy. -Edna St. Vincent Millay

cancer.net/cancer-types/ childhood-cancer

Oncologist approved cancer information from the American Society of Clinical Oncology. Information about diagnosis, treatment options, clinical trials, side effects, etc.

6116 Executive Boulevard, #3036A Bethesda, MD 20892 phone: (800) 422-6237 contact: cancergovstaff@mail.nih.gov cancer.gov

General information, cancer topics, disease-specific information, clinical trials, lists of treatment centers by state and more. These 4 specific areas may be most helpful:

List by State of Cancer Treatment Centers of Excellence

cancercenters.cancer.gov/cancer_ centers/cancer-centers-list2.html.

List with contact information and direct links to cancer treatment centers in the US. Detailed profiles and maps.

Search Specific Cancer Types

cancer.gov/cancertopics

In-depth information for the patient and clinician on types of cancers, treatment, clinical trials, coping with cancer, support resources, etc. Find specific types from lists or searches.

Clinical Trials

contact: cancermail@icicc.nci.nih.gov cancer.gov/clinicaltrials

contact: ihonline@aetna.com intelihealth.com

Comprehensive clinical trial information center for patients, health professionals, and the public. Information on understanding trials, deciding whether to participate in trials, finding specific trials, research news and other resources.

KidsHealth.org

National Library of Medicine Guide to Finding Health Information

InteliHealth

Offers descriptions of childhood cancers along with information on symptoms, prognosis, treatment and nutrition information. kidshealth.org/ parent/medical/index.html

General and disease-specific cancer information.

MedlinePlus.gov

nlm.nih.gov/medlineplus/ cancerinchildren.html

Many authoritative links on treatments, coping, nutrition, organizations and more. Provides a search box where you can enter any type of cancer treatment to get more information. 2 | Where to Begin Your Search

National Cancer Institute

8600 Rockville Pike Bethesda, MD 20894 phone: (888) 346-3656 contact: custserv@nlm.nih.gov nlm.nih.gov

Many links, tips and resources to help you identify reputable organizations, find reliable health information, and evaluate websites.


55 Kenosia Avenue P.O. Box 1968 Danbury, CT 06813-1968 phone: (800) 999-6673 contact: orphan@rarediseases.org rarediseases.org

Provides current information on rare diseases, including numerous forms of pediatric cancer and a comprehensive listing of links that offer information and assistance.

Oncolink University of Pennsylvania oncolink.org

Helps cancer patients, families, health care professionals and the general public get accurate cancerrelated information at no charge. Has comprehensive information about specific types of cancer, updates on cancer treatments and news about research advances.

Where to Begin Your Search

National Organization for Rare Disorders

Where to Begin Your Search | 3


Notes:

4|


Your child’s cancer diagnosis and treatment impacts everyone in your family. You look for support, learn to advocate, strive to understand the treatments and their effects, recognize the needs of your ill child and his/ her siblings, all while struggling with your own emotions and reactions. This section lists various organizations and websites that provide information and resources for families of children with cancer or other life-threatening illnesses.

Information and Resources

Information and Resources

Information and Resources | 5


Disease-Specific Resources Alphabetical listing of resources offering services for specific types of pediatric cancer.

Bone Ewing sarcoma, osteosarcoma, peripheral primitive neuroectodermal tumors The Cure Our Children Foundation

phone: (310) 355-6046 contact: barry@cureourchildren.org cureourchildren.org

Site maintained by family of a childhood Ewing’s survivor. Contains many links to information on treatment, clinical trials, and support organizations.

Brain

Sometimes, the best way to help someone is just to be near them.

-Veronica Roth

Astrocytoma, ATRT, brainstem glioma, Choroid Plexus Tumor, craniopharyngioma, ependymoma, ganglioglioma, germ cell tumors, high grade glioma, low grade glioma, optic nerve gliomas, medulloblastoma, pineoblastoma, PNET, spinal cord tumors Aimee’s Army

P.O. Box 37 Scranton, PA 18504 contact: annette@aimeesarmy.com aimeesarmy.com

Nonprofit organization, set up to raise awareness and funding for DIPG pediatric brain tumors and all childhood cancer research.

American Brain Tumor Association 2720 River Road, Suite 146 Des Plaines, IL 60018 phone: (800) 886-2282 fax: (847) 827-9918 contact: info@abta.org abta.org

Free services including publications about brain tumors, support group lists, referral information, a pen-pal program, and research support.

6 | Information and Resources

Brain Trust

186 Hampshire St Cambridge, MA 02139-1320 phone: (617) 876-2002 fax: (617) 876-2332 contact: info@braintrust.org braintrust.org

Information and support about brain tumors and related conditions.

Brain Tumor Foundation for Children, Inc.

6065 Roswell Rd., NE, Suite 505 Atlanta, GA 30328 phone: (404) 252-4107 contact: info@braintumorkids.org braintumorkids.org

Information and emotional support for families of children with brain tumors. Promotes public education, awareness, raises funds to support research and quality of life.

Brain Tumour Foundation of Canada 620 Colborne St., Suite 301 London, Ontario, Canada N6B3R9 phone: (800) 265-5106 contact: btfc@btfc.org braintumour.ca

Overview of the brain and how it functions, facts about brain tumors, descriptions of types of tumors and cysts, an overview of current treatments, what to expect at the hospital and home, glossary of terms.

Childhood Brain Tumor Foundation

20312 Watkins Meadow Dr. Germantown, MD 20876 phone: (301) 515-2900 contact: cbtf@childhoodbraintumor.org childhoodbraintumor.org

Volunteer-run organization to help educate and counsel families whose children have been diagnosed with brain tumors.


Meningioma Mommas

Strives to improve the treatment, quality of life, and the long-term outlook for children with brain and spinal cord tumors through research, education, support, education, and advocacy to families and survivors. Offers a monthly support group and referral to available resources. A comprehensive guide for parents of children with brain and spinal cord tumors is available, as well as a newsletter and brochure.

Online support group for those affected by meningioma brain tumors. The site includes resource links, discussion board, events, humor, inspiration, and merchandise.

274 Madison Avenue, Suite 1004 New York, NY 10016 phone: (212) 448-9494 contact: info@cbtf.org cbtf.org

Dana-Farber Cancer Institute

Children’s Hospital Boston 44 Binney Street, 3rd Floor Boston, MA 02115 phone: (617) 632-3000 dana-farber.org/Pediatric-Care/ Treatment-and-Support/BrainTumor.aspx

Information on different types of brain cancer.

Florida Brain Tumor Association

P.O. Box 770182 Coral Springs, Florida 33077-0182 phone: (954) 755-4307 floridabraintumor.com

Resources, support groups, and emotional support to ease families through the initial shock of diagnosis.

Lash and Associates Publishing/Training

100 Boardwalk Dr. #150 Youngsville, NC 27596 phone: (919) 556-0300 contact: information@lapublishing.com lapublishing.com

Primary focus is the neurological, psychological, communicative, psychosocial and educational impact of brain injuries among children, youth and young adults. Provides practical, informative, and affordable materials for families, survivors, health care professionals, rehabilitation specialists, educators and community staff.

9249 S. Broadway Blvd. Unit 200 - PMB #240 Highlands Ranch, CO 80129 contact: info@meningiomamommas.org meningiomamommas.org

Musella Foundation 1100 Peninsula Blvd. Hewlett, NY 11557 phone: (516) 295-4740 virtualtrials.com

Basic information on tumors, questions and answers, finding treatments, news, virtual trials, videos, chat, newsletter, brain tumor centers, survivor stories, and trials matcher. Information is reviewed by a medical advisory board before being posted.

Disease-Specific Resources

Children’s Brain Tumor Foundation

National Brain Tumor Foundation 22 Battery Street, Suite 612 San Francisco, CA 94111 phone: (415) 834-9970 contact: nbtf@braintumor.org braintumor.org

Support and education for brain tumor patients and their families.

National Institute of Neurological Disorders and Stroke P.O. Box 5801 Bethesda, MD 20824 phone: (800) 352-9424 TTY: (301) 468-5981 ninds.nih.gov/disorders/ brainandspinaltumors

Supports and conducts research on the healthy and diseased brain, spinal cord, and peripheral nerves. Website provides information, articles, news, and funding for research.

Pediatric Brain Tumor Foundation

302 Ridgefield Ct. Asheville, NC 28806 phone: (800) 253-6530 fax: (828) 665-6894 contact: familysupport@pbtfus.org pbtfus.org

Researches causes and treatments for childhood brain tumors; supports national database on primary brain tumors and increasing public awareness. Provides educational and emotional support for children and families. Information and Resources | 7


Pituitary Network Association

P.O. Box 1958 Thousand Oaks, CA 91358 phone: (805) 499-9973 contact: info@pituitary.org pituitary.org

Devoted to the treatment and cure of pituitary disorders by providing public awareness programs and educational seminars, interactive websites, and referral programs.

Southeastern Brain Tumor Foundation P.O. Box 422471 Atlanta, GA 30342 contact: info@stbf.org sbtf.org

Information, education, and support services for brain tumor patients and their families, and links to additional brain tumor organizations.

Tumor Free

contact: contact@tumorfree.com tumorfree.com

Resources for both patients and caregivers beginning at diagnosis, and throughout the entire brain tumor battle.

Breast Breastcancer.org

It is much more important to know what sort of patient has the disease than what sort of disease the patient has. -Sir William Osler, M.D.

breastcancer.org

Information on breast cancer diagnosis, treatment, living day-to-day, and risk factors. Also includes “Ask-the-Expert� online forums, online discussion boards and chat rooms.

National Lymphedema Network

116 New Montgomery St., Suite 235 San Francisco, CA 94105 phone: (415) 908-3681 contact: nln@lymphnet.org lymphnet.org

Provides education, management and prevention information to lymphedema patients and the general public. Topics include: referrals to lymphedema treatment centers, health care professionals, support groups, a quarterly newsletter, pen-pals, updated resource guide, a biennial Patient Summit for patients and family, and an extensive computer database.

Susan G. Komen for the Cure

5005 LBJ Freeway, Suite 250 Dallas, TX 75244 phone: (972) 855-1600 komen.org

Provides extensive support, education, and resources to patients and families.

Endocrine Adrenal adenoma, carcinoma, ovarian cancer, pancreatic cancer, pheochromocytoma, testicular cancer, thymus cancer, thyroid carcinoma Endocrine Society

8401 Connecticut Avenue, Suite 900 Chevy Chase, MD 20815-5817 phone: (301) 941-0200 fax: (301) 941-0259 contact: endostaff@endo-society.org endo-society.org

Website offers information about endocrinology, physician referral, clinical trials network, links to other resources and articles.

Carcinoid Cancer Foundation

333 Mamaroneck Avenue # 492 White Plains, NY 10605 phone: (888) 722-3132 contact: carcinoid@optonline.net carcinoid.org

Comprehensive and up-to-date resource with information about carcinoid and neuroendocrine tumors. Information about doctors, support groups, treatment, clinical trials, and resources.

Hirshberg Foundation for Pancreatic Cancer Research 2990 S. Sepulveda Blvd., Suite 3000 Los Angeles, CA 90064 phone: (310) 473-5121 contact: agi@pancreatic.org pancreatic.org

Dedicated to advancing pancreatic cancer research and providing information, resources, and support pancreatic cancer patients and their families.

Lustgarten Foundation for Pancreatic Cancer Research 1111 Stewart Avenue Bethpage, NY 11714 phone: (866) 789-1000 lustgarten.org

Information and support for pancreatic cancer patients, their families and friends, including additional resource links. 8 | Information and Resources


nlm.nih.gov/medlineplus/ ovariancancer.html

From the National Institutes of Health and National Library of Medicine. Authoritative links to disease information, diagnosis, treatment, prevention, and support organizations.

Pancreatic Cancer Action Network

1500 Rosecrans Ave., Suite 200 Manhattan Beach, CA 90266 phone: (877) 272-6226 contact: info@pancan.org pancan.org

General information and support to caregivers and patients. Extensive patient information and guidance are available.

Pancreatica

312 Fountain Ave. Pacific Grove, CA 93950 phone: (831) 658-0600 pancreatica.org

Worldwide focal and gathering point for the latest news and information about clinical trials and medical treatments. Presents impartial knowledge to help optimize personal treatment strategies.

Testicular Cancer: MedlinePlus.gov nlm.nih.gov/medlineplus/ testicularcancer.html

From the National Institutes of Health and National Library of Medicine. Authoritative links to disease information, diagnosis, treatment, prevention, and support organizations. Includes section on children and teens.

Leukemia and Lymphoma Leukemias: Acute lymphoblastic, acute lymphocytic, acute myeloid chronic myeloid, chronic lymphocytic, hairy cell Lymphomas: Hodgkin’s, MDS, Non-Hodgkin’s, Burkitt’s, large cell, T-cell, B-cell

Children’s Leukemia Research Association

585 Stewart Ave, Suite 18 Garden City, NY 11530 phone: (516) 222-1944 contact: info@childrensleukemia.org childrensleukemia.org

Patient aid program to help pay for leukemia medication not covered by insurance. Also funds several research grants. Intergroup Acute Myelocytic Leukemia Study.

International Myeloma Foundation

12650 Riverside Drive, Suite 206 North Hollywood, CA 91607-3421 phone: (800) 452-2873 contact: TheIMF@myeloma.org myeloma.org

Provides up-to-date and in-depth information about myeloma including research and treatment advances, as well as information about the IMF, upcoming events and research, education, support and advocacy programs.

Disease-Specific Resources

Ovarian Cancer: Medlineplus.gov

Leukemia & Lymphoma Society 1311 Mamaroneck Ave., Suite 310 White Plains, NY 10605 phone: (800) 955-4572 lls.org

Family support group programs, referrals to local sources of help, education, patient aid, and research funding. Focuses on leukemia, lymphomas, myeloma, and Hodgkin’s disease. Financial assistance for drugs used in care, treatment, and/or control of disease: transfusing blood; transportation to and from a doctor’s office, hospital, or treatment center; and x-ray treatment.

Leukemia Research Foundation 3520 Lake Ave., Suite 202 Wilmette, IL 60091 phone: (847) 424-0600 contact: info@lrfmail.org leukemia-research.org

Brings parents together worldwide to share experiences of caring for children who have leukemia. Offers educational resources, emotional support, and financial assistance.

Information and Resources | 9


Lymphoma Research Foundation

115 Broadway Ave., Suite 1301 New York, NY 1006 phone: (212) 349-2910, (800) 500-9976 contact: lrf@lymphoma.org lymphoma.org

Website contains information for patients on what’s new, general information on lymphoma, support group listings, clinical trial information, a helpline, and connections to others with lymphoma through a program called “Cell Mates.”

Multiple Myeloma Research Foundation 383 Main Ave., 5th Floor Norwalk, CT 06851 phone: (203) 229-0464 contact: info@themmrf.org themmrf.org

Information about Myeloma, clinical trials, research, advocacy, links to other resources and events.

National Children’s Leukemia Foundation

7316 Avenue 4 Brooklyn, NY 11234 phone: (718) 251-1222 contact: info@leukemiafoundation.org leukemiafoundation.org

No one is useless in this world who lightens the burdens of another. -Charles Dickens

Services, support, and referrals to leukemia patients and their families. Primary goal is to ensure access to state-of-the-art treatment for every leukemia patient regardless of ability to pay. The organization has a program, “Make a Dream Come True,” which grants wishes to young leukemia patients. See, “Wishing Organizations.”

Liver Hepatoblastoma, hepatocellular carcinoma, post-cirrhotic hepatoma American Liver Foundation 39 Broadway Ave., Suite 2700 New York, NY 10006 phone: (212) 943-1059 contact: info@liverfoundation.org liverfoundation.org

Information, resources, and relevant links for cancer of the liver.

10 | Information and Resources

Children’s Liver Association for Support Services

25379 Wayne Mills Place, Suite 143 Valencia, CA 91355 phone: (877) 679-8256 classkids.org

Information about pediatric liver disease, a newsletter, resource links, medical articles, and a parent matching system that links families for friendship and support.

Lung Non-small cell lung cancer, small cell lung cancer American Lung Association

1301 Pennsylvania Ave., NW., Suite 800 Washington, DC 20004 phone: (800) 548-8252 contact: info@lungusa.org lungusa.org

Free publications to help conquer lung disease and promote lung health.

Lung Cancer 101 lungcancer.org

A service of CancerCare that provides free, professional support including: counseling, support groups, financial assistance, educational workshops and publications to anyone coping with lung cancer.

Nervous System Ganglioneuroblastoma, neuroblastoma, neurofibroma, neurofibromatosis, peripheral nerve sheath tumor Children’s Neuroblastoma Cancer Foundation 360 W. Schick Rd., Suite 23 #211 Bloomingdale, IL 60108 phone: (866) 671-2623 fax: (630) 351-2462 contact: info@cncf-childcancer.org cncfhope.org

Information to educate the public and pediatricians concerning such cancers, a forum for patients and family members, and information on treatment, palliative care, hospice services, bereavement groups and emotional support.


95 Pine Street, 16th Floor New York, NY 10005 phone: (212) 344-6633 contact: info@ctf.org ctf.org

Support services for patients and families, such as support group activities and referrals to qualified physicians and healthcare professionals. Topics include: what is NF, finding a doctor, research, clinical trials, activities by state, youth programs, publications, bulletin board, chat room, additional resources, and products.

Neuroblastoma: Children’s Cancer Society P.O. Box 957672 Hoffman Estates, IL 60195 phone: (800) 532-5162 contact: info@neuroblastomacancer.org neuroblastomacancer.org

Dedicated to fundraising, support, research, and advocacy for children with neuroblastoma and their families. Members are mainly parents or relatives of children diagnosed with neuroblastoma. Parent-to-parent information network online and a newsletter are available.

Neuroblastoma Society

contact: secretary@neuroblastoma.org.uk nsoc.co.uk United Kingdom site offers parental

support to families of children with neuroblastoma. Website includes downloadable booklet for parents and a newsletter.

Peripheral Nerve Sheath Tumor: CureSearch.org

4600 East West Highway, Suite 600 Bethesda, MD 20814-3457 phone: (800) 458-6223 contact: info@curesearch.org curesearch.org

Information and support on stages, and treatment. Features a downloadable handbook to help guide families through treatment.

Ocular Retinoblastoma, Choroidal Hemangioma, Choroidal Melanoma, Choroidal Metastasis, Choroidal Nevus, Conjunctival Tumors, Eyelid Tumors, Iris Tumors, Melanocytoma, Orbital Tumors

Eye Cancer Network

115 East 61st Street New York, NY 10021 phone: (212) 832-8170 contact: info@eyecancer.com eyecancer.com

Information about the diagnosis and treatment of ocular tumors, eye cancer, and orbital diseases for patients, their families, and the health professionals who care for them.

National Retinoblastoma Research Support Foundation Bascom Palmer Eye Institute University of Miami School of Medicine, Ocular Oncology Service 900 Northwest 17th Street Miami, FL 33136 phone: (800) 329-7000 eyecancermd.org

Local support groups organized by parents and friends of children with retinoblastoma. Organization disseminates information and resources to families dealing with the emotional pain and anxieties related to having a child diagnosed with retinoblastoma.

Disease-Specific Resources

Children’s Tumor Foundation

Retinoblastoma International

8030 Brookhurst Street, Box 408 Fountain Valley, CA 92708 phone: (323) 669-2299 fax: (323) 660-8541 contact: info@retinoblastoma.net retinoblastoma.net

Information, answers to frequently asked questions, children’s stories, and a resource to find doctors.

Oral, Head, and Neck Nasopharyngeal carcinoma, esthesioneuroblastoma, thyroid tumors AboutFace

1057 Steeles Ave., West P.O. Box 702 North York, ON M2R 3X1 phone: (416) 597-2229 contact: info@aboutface.ca aboutfaceusa.org/

Supporting individuals touched by facial differences with peer connections, information, emotional support and opportunities to enhance their life circumstances.

Information and Resources | 11


American Head and Neck Society

11300 W. Olympic Blvd, Suite 600 Los Angeles, CA 90064 phone: (310) 437-0559 contact: admin@ahns.info ahns.info

Information on meetings, events, clinical resources, research, and patient education. Promotes and advances the knowledge of prevention, diagnosis, treatment, and rehabilitation of neoplasms and other diseases of the head and neck.

Head and Neck Cancer Alliance P.O. Box 21688 Charleston, SC 29413 phone: (866) 792-4622 headandneck.org

Provides support to patients, education to children and adults in the disease process, treatment and prevention of head and neck cancer, and supports ongoing research.

Support for People with Oral, Head and Neck Cancer P.O. Box 53 Locust Valley, NY 11560 phone: (800) 377-0928 contact: info@spohnc.org spohnc.org

Information on cancers affecting the mouth, head, and neck. Addresses the broad emotional, physical, and humanistic needs of these patients.

The only courage that matters is the kind that gets you from one moment to the next. -Mignon McLaughlin

Skin Melanoma, lipoma, squamous and basal cell carcinoma American Academy of Dermatology P.O. Box 4014 Schaumburg, IL 60168-4014 phone: (866) 503-7546 aad.org

Find a dermatologist, learn about skin cancer. Includes a page for kids, chat rooms, and home pages.

Soft Tissue Sarcoma Alveolar soft-part sarcoma, rhabdomyosarcoma, nonrhabdomyosarcoma, fibrosarcoma, synovial sarcoma, leiomyosarcoma, desmoid tumor, liposarcoma, neurofibrosarcoma, spindle cell tumor, synovial sarcoma Northwest Sarcoma Foundation

P.O. Box 91460 Portland, OR 97291 phone: (503) 781-0921 contact: comments@nwsarcoma.org nwsarcoma.org

Support and education for those who are living with a sarcoma and other rare bone tumor diseases. It provides a basic or general overview of sarcoma diseases and then points you to more comprehensive resources. Resources and leading expert information from around the world is also provided.

Sarcoma Alliance

775 East Blithedale, #334 Mill Valley, CA 94941 phone: (415) 381-7236 contact: info@sarcomaalliance.org sarcomaalliance.org

Guidance, education and support to patients and families. Information includes treatments, clinical trials, complimentary therapy, articles, papers, links, discussion board, chat rooms, and peer-to-peer network.

Sarcoma Foundation of America

9899 Main Street, Suite 204 Damascus, Maryland 20872 phone: (301) 253-8687 contact: info@curesarcoma.org curesarcoma.org

Patient resources that include: information and support, clinical trials and a public forum.

Urogenital Germ cell tumors, bladder cancer, cervical cancer, ovarian cancer, prostate cancer, testicular cancer, Wilms’ tumor (nephroblastoma), renal cell cancer, clear cell sarcoma, rhabdoid neuroepithelial

12 | Information and Resources


Fred Hutchinson Cancer Research Center 1100 Fairview Avenue N P.O. Box 19024 Seattle WA 98109-1024 phone: (800) 553-4878 nwtsg.org

Federally funded, multi-institutional study of the treatment of Wilms’ tumor patients. Organization involves the collaboration of pediatric surgeons, oncologists, radiation oncologists, urologists, and allied health professionals with a goal of developing more effective treatments as well as investigating the causes of this cancer.

Ovarian Germ Cell Cancers: National Cancer Institute cancer.gov/cancertopics/types/ ovarian

Information on ovarian germ cell cancer, diagnosis, treatment, and more.

Urology Health urologyhealth.org

Provides a wide range of services, including publications, an annual meeting, and numerous continuing medical education opportunities. The website offers a search database for information on pediatric urology. Content is accompanied by medical illustrations when appropriate.

Other Hematology/ Immune Deficiency Syndromes and Conditions For rare cancers and related disorders including fanconi anemia, neutropenia, langerhans cell histiocytosis, pulmonary blastoma, aplastic anemia, HLH, Lymphedema Von Hippel Lindau, mesothelioma

American Society of Pediatric Hematology/ Oncology 4700 W. Lake Ave Glenview, IL 60025 phone: (847) 375-4716 fax: (847) 375-6483 contact: info@aspho.org aspho.org

A professional society of pediatric hematologists/oncologists who study and treat childhood cancer and blood diseases. Offers online resources and links to aid in finding other related information through the Internet about your child’s illness.

Aplastic Anemia and MDS International Foundation 100 Park Ave, Suite 108 Rockville, MD 20850 phone: (800) 747-2820 contact: help@amds.org aplastic.org

Disease-Specific Resources

National Wilms’ Tumor Study Group

Patient assistance and emotional support. Provides educational materials and updated medical information on aplastic anemia, myclodysplastic syndromes, and paroxysmal nocturnal hemoglobinuria.

Fanconi Anemia Research Fund

1801 Willamette Street, Suite 200 Eugene, OR 97401 phone: (541) 687-4658 contact: info@fanconi.org fanconi.org

Education and support services to affected families worldwide.

Fanconi Canada P.O. Box 38157

Toronto, ON M5N 3A9 Canada phone: (416) 489-6393 contact: admin@fanconicanada.org fanconicanada.org/en

Information and news about Fanconi with links to family support.

Histiocytosis Association of America 332 North Broadway Pitman, NJ 08071 phone: (856) 589-6614 contact: histiocyte@aol.com histio.org Provides solutions to some of the

problems which are specific to patients suffering from this disease and to offer support to patients and their families; to educate and establish better treatments.

Information and Resources | 13


Langerhans Cell Histiocytosis

children.webmd.com/langerhanscell-histiocytosis

General information on Langerhans Cell Histiocytosis.

Madison’s Foundation P.O. Box 241956 Los Angeles, CA 90024 phone: 310) 264-0826 contact: getinfo@ madisonsfoundation.org madisonsfoundation.org

Databases of rare pediatric diseases and a glossary of unfamiliar terminology. Numerous resources and information available.

Mesothelioma Web phone: (877) 367-6376 mesotheliomaweb.org

Mesothelioma Web is a comprehensive, patient-focused website that explains the causes, symptoms, and treatments for the cancer mesothelioma. The site covers both juvenile and adult cancer.

National Cancer Institute Unusual Cancers of Childhood

-Helen Keller

Information on the prevention, management and supportive care of primary and secondary lymphedema to patients and healthcare professionals. Serves as a resource center for patients and health care professionals, and publishes a newsletter.

Von Hippel Lindau Family Alliance

2001 Beacon Street, Suite 208 Boston, MA 02135-7787 phone: (800) 767-4845 fax: (866) 209-0288 contact: info@vhl.org vhl.org

Information and support to families with rare familial disorder Von Hippel Lindau Syndrome. Includes a reference handbook for people with VHL, their families, and support personnel.

Sussex County Medical Association Neutropenia

National Organization for Rare Disorders

Information on neutropenia.

55 Kenosia Avenue Danbury, CT 06813-1968 phone: (800) 999-6673 TDD: (203) 797-9590 contact: orphan@rarediseases.org rarediseases.org

Identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Provides medication assistance, networking, resource guide, and a library of links, news and information, including databases of diseases, organizations and subscriptions.

Neutropenia Support Association Inc.

P.O. Box 243 Winnipeg, Manitoba Canada, R3M 3S7 phone: (800) 663-8876 contact: stevensl@neutropenia.ca neutropenia.ca

Articles about Neutropenia organized into different categories. Information is also distributed through the mail to caregivers, patients and their families. 14 | Information and Resources

116 New Montgomery Street, Suite 235 San Francisco, CA 94105 phone: (800) 541-3259 fax: (510) 208-3110 contact: nln@lymphnet.org lymphnet.org

cancer.gov/cancertopics/pdq/ treatment/unusual-cancerschildhood

Information on unusual cancers in children.

The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.

National Lymphedema Network

123 Newton Sparta Rd Newton, NJ 07860 phone: (973) 579-6300 scma-docs.com/neutro_pg.htm

Syndromes, Complications and Side Effects related to Cancer Treatment – National Cancer Institute cancer.gov/cancertopics

Links to patient/professional articles on various cancer treatment topics, including: pain, fatigue, heart and gastrointestinal complications, late effects of childhood cancer treatment, lymphedema, etc.


National organizations that offer a variety of support to help families. American Cancer Association 250 Williams Street Atlanta, GA 30303 phone: (800) 227-2345 fax: (404) 325-2217 cancer.org

Nationwide, community-based, voluntary health organization that assists people with cancer through research, education, advocacy and service. The information line can: • Answer many questions by telephone and offer free publications regarding diagnosis, treatment, and nutrition • Provide information and counseling for the cancer patient and the patient’s family • Provide information and guidance concerning ACS services, community health services, and other resources, such as providing transportation to and from a doctor’s office, clinic or hospital for treatment • Arrange for lodging • Provide information about home health care, blood programs, assistance with employment problems and social work assistance

American Childhood Cancer Foundation

P.O. Box 498 Kensington, MO 20895-0498 phone: (855) 858-2226 contact: staff@acco.org acco.org

National pediatric cancer foundation provides information, local support groups and specialized information to families and caregivers of children with cancer. Organization formed by parents of young cancer patients. Helps families cope with the emotional stresses of their experiences, provides information on camps for children with cancer, has an ombudsman program to assist families and survivors with education, employment, insurance, welfare or military enlistment.

American Counseling Association

5999 Stevenson Ave. Alexandria, VA 22304 phone: (800) 347-6647 fax: (800) 473-2329 contact: dpennington@counseling.org counseling.org

Professional resources and educational information.

American Family Therapy Academy

Support and Counseling

Support and Counseling

1608 20th Street, NW, 4th Floor Washington, DC 20009 phone: (202) 483-8001 contact: afta@afta.org afta.org

Resource for all concerned with the health of the family. Provides a forum for exchange of cutting edge ideas; fosters policies that support the welfare of families and children, social justice, and cultural diversity; sponsors annual meetings; conducts a biennial clinical research meeting; publishes a newsletter.

Association of Cancer Online Resources (ACOR) 173 Duane Street, Suite 3A New York, NY 10013-3334 phone: (212) 226-5525 acor.org

Provides access to mailing lists that provide support, information, and community to everyone affected by cancer and related disorders. Develops and hosts state-of-the-art, internet-based knowledge systems that allow the public to find and use credible information relevant to their illness.

Association of Oncology Social Work Journal of Psychosocial Oncology 100 North 20th Street, Suite 400 Philadelphia, PA 19103 phone: (215) 599-6093 fax: (215) 564-2175 contact: info@aosw.org aosw.org/html/patients

Provides a wide range of services directly to persons with cancer and their families including counseling, support, education, and resource identification. Information and Resources | 15


Association of Pediatric Hematology/Oncology Nurses 4700 W. Lake Avenue Glenview, IL 60025 phone: (855) 202-9760 fax: (847) 375-6478 contact: info@apon.org apohn.org

A professional organization for registered nurses caring for children with cancer and their families. Offers information on nursing children with cancer. Although this site is directed towards nurses, parents will find helpful information and learn a nurse’s perspective on childhood cancer as well as the standard of care that is expected of them.

Association of Pediatric Oncology Social Workers aposw.org/html/familyresources.php

A professional organization for pediatric oncology social workers. Focused on enhancing the lives of children with cancer and the families who care for them. Resources for the social workers role, coping, sibling issues, school, end of treatment, relapse, transplant, grief, and loss.

Bandaids & Blackboards

lehman.cuny.edu/faculty/jfleitas/ bandaides

Friends are those rare people who ask how you are and then wait to hear the answer. -Ed Cunningham

Helps people understand what it’s like to grow up with medical issues from the perspective of kids and teens. These kids have become experts at coping with problems that most people have never heard of. The contents are divided into three sections; one for kids, one for teens, and one for adults.

Bear Necessities Pediatric Cancer Foundation

55 West Wacker Drive, Suite 1100 Chicago, IL 60610 phone: (312) 214-1200 fax: (312) 214-7797 contact: office@bearnecessities.org bearnecessities.org

Attends to immediate needs and research to help fight pediatric cancer.

Bravekids.org

1825 K Street NW, Suite 600 Washington, DC 20006 phone: (800) 872-5827 contact: info@upc.org bravekids.org

Resources to help your child, support from other parents, and medical information. 16 | Information and Resources

Cancer Care, Inc.

275 7th Avenue New York, NY 10001 phone: (800) 813-4673 contact: info@cancercare.org cancercare.org

Group, individual, family, and bereavement counseling (in person, online and through telephone); information and referral to local community resources; supplementary financial assistance for home care, transportation and pain medication; volunteer visitor program; community education programs; technical assistance to professionals regarding psychosocial aspects of cancer; and an African-American and Hispanic Outreach Program.

Cancer Hope Network

2 North Road, Suite A Chester, NJ 07930 phone: (800) 552-4366 contact: info@cancerhopenetwork.org cancerhopenetwork.org

Free, confidential, one-on-one support to people with cancer and their families. Matches patients with trained volunteers who have themselves undergone a similar experience. Provides support and hope helping patients and families look beyond the diagnosis, cope with treatment, and live life to its fullest.

Cancer Infomation and Counseling Line

13001 East 17th Place MSF-500 Aurora, CO 80045 phone: (303) 724-7824 contact: contactus@amc.org amc.org

National toll-free line that provides medical information, emotional support, and resources.

CancerNet

2318 Mill Road, Suite 800 Alexandria, VA 22314 phone: (703) 299-0150 contact: asco@asco.org asco.org

Brings the expertise and resources of the American Society of Clinical Oncology (ASCO), and the voice of the world’s cancer physicians, to people living with cancer and those who care for them. Composed of more than 27,000 oncologists globally who are the leaders in advancing cancer care. Information and content was developed and approved by doctors who are members of ASCO, making CancerNet the most up-todate and trusted resource for cancer information on the Internet.


1715 Yankee Doodle Road, Suite 301 Eagan, MN 55121 phone: (651) 452-7940 caringbridge.org

An online space where you can connect, share news and receive support. Make your own personal site to keep others informed throughout your journey.

Chai Lifeline

151 30th St. New York, NY 10001 phone: (877) 242-5433 contact: info@chailife.org chailifeline.org

Maintains a large network of free health support services that provides invaluable practical, psychological and emotional assistance to more that 3,000 seriously ill children and their families.

Child Life Council, Inc.

11821 Parklawn Drive, Suite 301 Rockville, MD 20852 phone: (301) 881-7090 contact: clcstaff@childlife.org childlife.org

Strives to reduce the impact of stressful or traumatic life events and situations which affect the development, health, and well-being of hospitalized infants, children, youth, and families.

Childhood Cancer Guides childhoodcancerguides.org/

Provides clear explanations of the various types of childhood cancer and treatments, emotional support for every member of the family, and access to helpful resources.

Childhood Leukemia Foundation 807 Mantoloking Road Brick, NJ 08723 phone: (888) 253-7109 contact: info@clf4kids.org clf4kids.org

Emotional, financial, social, educational, and recovery support to children with cancer and their families. CLF serves as a resource center and works in partnership with over 130 specialized cancer treatment centers nationwide.

Exceptional Cancer Patients

522 Jackson Park Drive Meadville, PA 16335 phone: (814) 337-8192 contact: info@mind-body.org ecap-online.org

Provides individual and group counseling for patients, families, and cancer survivors. Founded by Bernie Siegal, M.D., author of Love, Medicine and Miracles and other books. Siegal is one of the most famous, and still controversial, advocates of mind-body approaches to cancer.

Family Voices

3701 San Mateo Bvld NE, Suite 103 Albuquerque, NM 87110 phone: (888) 835-5669 contact: kidshealth@familyvoices.org familyvoices.org

Support and Counseling

CaringBridge

Resources, tips, brochures and a newsletter offering advocacy for children’s health care needs.

Federation for Children with Special Needs 529 Main Street, Suite 1102 Boston, MA 02129 phone: (800) 331-0688 contact: FCSNinfo@fcsn.org fcsn.org

Services to families of children with special health care needs. Provides information, support and assistance.

Food and Drug Administration

10903 New Hampshire Ave Silver Springs, MD 20993 phone: (888) 463-6332 contact: webmail@oc.fda.gov fda.gov

Cancer liaison office that works closely with cancer patients, listening to their concerns and educating them about the FDA drug approval process, cancer clinical trials, and access to investigational therapies.

Gesundheit Institute P.O. Box 307 Urbana, IL 61803 phone: (703) 525-8169 patchadams.org

Hospital devoted to free healthcare, healing, and humor. Founded by Patch Adams, M.D. Educational resources available.

Information and Resources | 17


Gold Ribbons for Childhood Cancer P.O. Box 532 Slatersville, RI 02876 phone: (401) 424-1176 goldribbons.com

Childhood cancer information and links to various childhood cancer organizations. Websites in honor and in memory of children who have or have had cancer. Offers customized cancer awareness jewlery and other items for sale.

Healthfinder

P.O. Box 1133 Washington DC 20013-1133 contact: healthfinder@nhic.org healthfinder.gov

Links to reliable health information sources including online publications, websites, support groups, government agencies, and nonprofit organizations.

-Swedish Proverb

LiveStrong Foundation 2201 E. Sixth St. Austin, TX 78702 phone: (866) 673-7205 fax: (512) 236-8482 contact: info@livestrong.org livestrong.org

LiveStrong provides the practical information and tools people living with cancer need to live strong. Four core program areas: education, advocacy, public health, and research.

Med Help International medhelp.org

Emotional support for children diagnosed with cancer and their families through message boards, links to other resources, fundraising ideas, and ways to increase community involvement and awareness.

National Children’s Cancer Society

Imerman Angels

Provides financial support and advocacy on behalf of children with bills, home care needs, insurance companies, hospitals, and other agencies to negotiate reasonable financial solutions for a child’s care. Support services and education about childhood cancer and nutrition are available as well.

400 W. Erie Street, Suite #405 Chicago, IL 60654 phone: (312) 274-5529 contact: info@imermanangels.org imermanangels.org

Provides one-on-one support: connecting cancer fighters, survivors and caregivers. Mentoring opportunity that matches a person touched by cancer with someone who has fought and survived the same type of cancer.

KidsHealth

kidshealth.org/

Information for families about children’s health issues. Links to pediatric related needs and cancer, kids’ pages relating to development, mental health, and illnesses.

18 | Information and Resources

Doctor-approved health information about children from before birth through adolescence. Provides families with accurate, up-to-date, and jargon-free health information they can use.

Honeysuckle Foundation for Children with Cancer P.O. Box 1491 Melville, NY 11747 phone: (631) 855-1009 contact: info@ honeysucklefoundation.org honeysucklefoundation.org

Friendship doubles our joy and divides our grief.

KidsHealth for Parents

kidshealth.org/parent/medical/ cancer/cancer.html

Founded in 1994 out of a shared need for better medical information and support, MedHelp is the pioneer in online health communities. The site connects people with the leading medical experts and others who have similar experiences.

One South Memorial Drive, Suite 800 St. Louis, MO 63102 phone: (314) 241-1600 children-cancer.com

National Mental Health Association

200 N. Beauregard St., 6th Floor Alexandria, VA 22311 phone: (703) 684-7722 nmha.org

USA’s oldest and largest nonprofit organization addressing all aspects of mental health and mental illness. With more than 340 affiliates nationwide, works to improve the mental health of all Americans, especially the 54 million people with mental disorders, through advocacy, education, research and service.


2030 M Street NW, Suite 350 Washington, DC 20036 phone: (800) 651-1151 p2pusa.org

Offers parent to parent support as a resource for families with children who have special health care needs.

On Top of Cancer ontopofcancer.org

Key cancer information with emphasis on searching for the best cancer treatment and support. Section on childhood cancer.

Pacer Center

Parent Advocacy Coalition for Educational Rights 8161 Normandale Blvd. Minneapolis, MN 55437 phone: (800) 537-2237 contact: pacer@pacer.org pacer.org/grandparent

Information on how to support, inform and empower grandparents to act as effective advocates for their specialneeds grandchildren.

Parents Against Cancer 10220 Riverside Drive, Suite B Toluca Lake, CA, 91602 phone: (818) 980-0208 iamhope.org

Organization committed to improving the quality of life for Latino children with cancer and their families. Offers health education, emotional support, and family services.

Parents Helping Parents 1400 Parkmoor Ave., Suite 100 San Jose, CA 95126 phone: (408) 727-5775 php.com

Comprehensive online, parentdirected, family resource for children with any special needs.

Psych Central psychcentral.com

Largest and oldest online independent mental health network, providing reliable, trusted information and self-help support communities for over 14 years. A catalog of support groups and mailing list groups organized by disability and condition.

R.A. Bloch Cancer Foundation

One H&R Block Way Kansas City, MO 64105 phone: (800) 433-0464 contact: hotline@hrblock.com blochcancer.org

Site offers books, articles, and audio resources for families faced with a cancer diagnosis.

Self-Help Sourcebook Online: Links to Cancer Organizations

Support and Counseling

National Parent to Parent Support and Information System

mentalhelp.net

A searchable database of information on over 1,100+ national, international and demonstrational model self-help support groups, ideas for starting groups, and opportunities to link with others to develop needed new national or international groups.

Special Love

117 Youth Development Court Winchester, VA 22602 phone: (888) 930-2707 speciallove.org

Offers cancer families a network of support, made up of other patients and families who know and understand the trials and triumphs of fighting cancer. Gives college scholarships for kids with cancer and emergency funds for families in trouble. Offers links to resources, kids sites and pen pals, operates weeklong camps and weekend programs for children with cancer ages 7 to 17.

Pediatric Oncology Resource Center ped-onc.org

For parents, friends, and families of children who have or had childhood cancer. A resource center with information about treatment, survivorship, grief, etc.

Information and Resources | 19


Starlight Children’s Foundation

2049 Century Park East, Suite 4320 Los Angeles, CA 90067 phone: (310) 479-1212 fax: (310) 207-2554 contact: info@starlight.org starlight.org

Serves seriously ill children (ages 4-18) with wish granting and inhospital entertainment. Targeted in two specific areas: out-patient (wish granting and pen-pal programs) and in-patient entertainment programs (Fun Centers, Starlight Rooms, clown programs, hospital parties). Addresses the core issues that accompany illness - the pain, fear, loneliness, and depression that can be as damaging as the sickness itself. Designed and chaired by Steven Spielberg, links to interactive sites for kids.

TeensHealth

kidshealth.org/teen

Doctor-approved health information for teens. Provides teens and families with accurate, up-to-date, and jargonfree health information they can use. KidsHealth also has separate areas for kids and parents – each with its own age-appropriate content.

Ulman Cancer Fund for Young Adults

6310 Stevens Forest Road, Suite 210 Columbia, MD 21046 phone: (888) 393-3863 ulmanfund.org

Support programs, education, and resources for young adults with cancer, and their families.

Vital Options International

Learn from yesterday, love for today, hope for tomorrow. -Albert Einstein

4419 Coldwater Canyon Ave. Suite 1 Studio City, CA 91604-1479 phone: (818) 508-5657 fax: (818) 788-5260 contact: info@vitaloptions.org vitaloptions.org

Communication, support, and advocacy to help people cope with cancer. Facilitates a global cancer dialogue. Best known for The Group Room – weekly syndicated radio call-in cancer talk show. Interactive website provides cancer information and resources.

20 | Information and Resources

Wellness Community

1050 17th Street, NW Suite 500 Washington, DC 20036 phone: (888) 793-9355 contact: help@thewellnesscommunity.org thewellnesscommunity.org

Provides emotional support, education and hope. Offers a full range of support services to cancer patients and their families in a comfortable home-like setting. Offers drop-in and on-going support groups, networking groups for specific types of cancer, educational workshops, stress management sessions, lectures by experts in the field of oncology, and social gatherings.


The following organizations offer support and information on managing pain associated with cancer, cancer treatment, and side effects. American Academy of Pain Management

Cancer Pain

Information about managing pain in a home care environment, resources, and links to other related information.

Cancer Pain Management in Children

American Pain Society

Information and resources including both pharmaceutical and nonpharmaceutical pain management.

975 Morning Star Drive, Suite A Sonora, CA 95370 phone: (209) 533-9744 contact: info@aapainmanage.org aapainmanage.org

4700 W. Lake Avenue Glenview, IL 60025-1485 phone: (847) 375-4731 fax: (847) 375-6477 contact: info@painmed.org painmed.org/patient

Link to the patient portal of the American Academy of Pain Medicine. Includes information on pain, help with finding pain management professionals, and links to other organizations.

American Society for Pain Management Nursing P.O. Box 15475 Lenexa, KS 66285-5473 phone: (888) 342-7766 contact: aspmn@goamp.com aspmn.org/Links/national_ international.htm

Links to organizations and websites on Pain Management. Resources and educational materials also available.

Cancer Information Service National Cancer Institute phone: (800) 422-6237 cancer.gov

Offers a variety of publications with information about treatment side effects, supportive care, types of cancer, children with cancer, complementary treatments, etc. Both patient and professional versions of many publications are available. Can find information by topic menus or searching.

CancerNet

phone: (888) 626-7727 contact: wilsong@cancernet.com cancernet.com

cancer-pain.org

Information on state-of-the-art management of cancer pain for patients, caregivers and healthcare professionals.

Pain Management

Pain Management

childcancerpain.org

CureSearch

4600 East West Highway, Suite 600 Bethesda, MD 20814-3457 phone: (800) 458-6223 curesearch.org/for_parents_and_ families/

Resources and techniques to help when the focus is on providing both physical and emotional comfort to a child and their family, and discovering ways to preserve their dignity and memory. Links include: palliative care, hospice, talking with your child.

Get Palliative Care.org getpalliativecare.org

Helps patients and families facing serious illness find relief from pain, fatigue, nausea, loss of appetite, and shortness of breath. Helps to better understand illness and choices for care. Palliative care is not hospice care. The goal of palliative care is to relieve the pain, symptoms and stress of serious illness – whatever the prognosis. It is appropriate for people of any age and at any point in an illness. It can be delivered along with curative treatments.

Healthfinder: Managing Cancer Pain

P.O. Box 1133 Washington, DC 20013-1133 contact: healthfinder@nhic.org. healthfinder.gov

Searchable gateway from the National Institutes of Health. Find information by topic menus or by searching.

Provides information and articles on relieving pain associated with cancer. Information and Resources | 21


NIH Pain Consortium painconsortium.nih.gov

Provides many links to pain management information, including links to cancer pain management.

Pain Management: OncoLink

Abramson Cancer Center of the University of Pennsylvania 3400 Spruce Street - 2 Donner Philadelphia, PA 19104-4283 fax: 215-349-5445 oncolink.org

Search for “Pediatric Cancer Pain Management�, which will provide helpful information and tips on minimizing the effects of chemotherapy, radiation, surgical procedures, and more.

World Health Organization, USA

Liaison Office in Washington 1889 F Street, Room 373 Washington, DC 20006 phone : (202) 974-3391 fax: (202) 974-3619 contact: info@who.int who.int/topics/cancer

Joy is not in things, it is in us. -Richard Wagner

22 | Information and Resources

WHO is the directing and coordinating authority for health within the United Nations system. Site provides information on pain management, with a section on childhood cancer pain.


The following organizations provide support, information, and/or services to families who have a child with a disability. Disabilities can range from vision loss to limb loss to learning disabilities. Your child may qualify for help from these organizations if he or she has disabling effects associated with cancer. Abledata

8630 Fenton St., Suite 930 Silverspring, MD 20910 phone: (800) 227-0216, TTY: (301) 608-8912 contact: abledata@orcmacro.com abledata.com

Information on thousands of assistive devices for home health care, from eating utensils to wheelchairs. Prices, names, and addresses of suppliers.

About Face

1057 Steeles Ave West PO Box 702 North York, ON M2R 3X1 phone: (800) 665-3223 contact: info@aboutfaceinternational.org aboutfaceinternational.org

Information, support services, educational programs, outreach and public awareness. The goal is to create an accepting environment where people who have facial differences can find support.

Accreditation Council on Services for People with Disabilities 100 West Road, Suite 300 Towson, MD 21204 phone: (410) 583-0060 fax: (410) 583-0063 contact: info@thecouncil.org thecouncil.org

Accreditation training and consultation to people caring for the disabled.

American Academy of Audiology 11480 Commerce Park Drive Reston, VA 20191 phone: (703) 790-8631 audiology.org

Information and database to assist in finding an audiologist, answers to frequently asked questions, consumer guides and links to other resources.

Disability

Disability

American Amputee Foundation

P.O. Box 94227 North Little Rock, AR 72190 phone: (501) 835-9290 contact: americanamputee@hotmail.com americanamputee.org

Empowers amputees, their families, and care providers to make informed decisions by providing them with information, referral, peer counseling, self-help literature, and education.

American Council on Education

finaid.org/otheraid/disabled.phtml

List of resources for students with disabilities seeking financial assistance with tuition for postsecondary education.

American Council of the Blind

2200 Wilson Blvd., Suite 650 Arlington, VA 22201-3354 phone: (800) 424-8666 acb.org

Information and referral on all aspects of blindness, scholarship assistance, public education and awareness training, support to consumer advocates and legal assistance, leadership and legislative training, consulting with industry regarding employment, governmental monitoring, consultation and advocacy including the “Washington Connection,� a national legislative hotline.

Americans with Disabilities Act

US Department of Justice 950 Pennsylvania Ave, NW Washington D.C. 20530 phone: (800) 514-0301 TTY: (800) 514-0383 ada.gov

Support and information to people with disabilities.

Information Informationand andResources Resources|| 29 23


American Disability Association

Disability Rights Education and Defense Fund

Education and support to people with disabilities. Helps people locate disability information and resources and to promote disability awareness.

Education, training and technical support. DREDF is the leading national law and policy center in disability civil rights.

815 First Avenue, Suite 280 Seattle, WA 98104 phone: (205) 328-9090 contact: freeman@adanet.org adanet.org

American Society for Deaf Children

600 Florida Ave. NE Washington, DC 20002-3695 phone: (800) 942-2732 contact: asdc@deafchildren.org deafchildren.org

Support, encouragement, and information to families with hearing impaired children. Services include: Parents Connected Network and a “First Year Free Program” for parents of newly identified deaf or hard of hearing children. Introductory one year membership at no charge.

To make a difference in someone’s life, you don’t have to be brilliant, rich, beautiful, or perfect. You just have to care. -Mandy Hale

Amputee Coalition of America

900 East Hill Avenue, Suite 290 Knoxville, Tennessee 37915-2568 phone: (888) 267-5669 amputee-coalition.org

Disabled Children’s Relief Fund P.O. Box 89 Freeport, NY 11520 phone: (516) 377-1605 dcrf.com

Advocate for the rights and needs of children with disabilities, including those with disabilities brought on by cancer treatments and side effects. Provides cash grants for children with preference given to families who do not have health insurance.

Disabled Sports USA

451 Hungerford Drive, Suite 100 Rockville, MD 20850 phone: (301) 217-0960 contact: kbauer@dsusa.org dsusa.org

Advocates for the rights of people with limb loss. This includes access to information, quality care, appropriate devices, reimbursement, and the services required to lead empowered lives. Provides resources, booklets, videotapes, fact sheets, technical help, and training programs. Also publishes inMotion Magazine.

Nationwide sports rehabilitation programs for anyone with a permanent physical disability. Supports sports as a rehabilitation process and offers competitive programs in summer and winter sports. It also conducts competitions and training camps to prepare and select athletes to represent the United States at the summer and winter Paralympic games.

ARCH: National Respite Network

Federation for Children with Special Needs

archrespite.org

Includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community.

Beginnings for Parents of Hearing Impaired Children, Inc. 302 Jefferson Street, Suite 110 Raleigh, NC 27605 phone: (919) 715-4092 TTY: (800) 541-4327 contact: raleigh@beginningssvcs.com ncbegin.org

Provides resources, information, and referrals about all methodologies and different educational programs for families with children who are hearing impaired. 24 | Information and Resources

3075 Adeline St., Suite 210 Berkeley, CA 94703 phone: (510) 644-2555 contact: info@dredf.org dredf.org

529 Main Street, Suite 1120 Boston, MA 02129 phone: (800) 331-0688 contact: FCSNinfo@fcsn.org fcsn.org

Provides a number of services to families of children with special health care needs. Provides information and referral to a variety of services, parent training and the development of family education and support groups.


Lighthouse for the Blind

Information on genetic counseling and genetic conditions. Seeks to empower individuals and advocacy organizations to help better the lives of individuals and families living with genetic conditions.

Free information on vision rehabilitation and other eye-related diseases. Can refer individuals to resources in their community. Has a free catalog on low-vision aids.

4301 Connecticut Ave., NW, Suite 404 Washington, DC 20008-2369 phone: (202) 966-5557 contact: info@geneticalliance.org geneticalliance.org

Hearing Disorders and Deafness: Medlineplus.gov nlm.nih.gov/medlineplus/ hearingdisordersanddeafness.html

Links to information, support organizations, specific treatments and disorders related to deafness.

HEATH Resource Center

The George Washington University 2134 G Street NW Washington, DC 20052-0001 contact: askheath@gwu.edu heath.gwu.edu/

Postsecondary education for individuals with disabilities. Information about educational support services, policies, procedures, adaptations, and opportunities at American campuses, vocationaltechnical schools, and other postsecondary training entities. Develops training modules; publishes resource papers, fact sheets, directories, and website information. Fosters a network of professionals in the arena of disability issues.

iCan, Inc.

870 Bowers St. Birmingham, MI 48009 contact: editor@icanonline.net icanonline.net

A one-stop resource for information, guidance, conversation and companionship. iCan brings together content, community and resources in one place that is easy to navigate.

Kids Together, Inc

P.O. Box 574 Quakertown, PA 18951 contact: staff@kidstogether.org kidstogether.org

111 East 59th Street New York, NY 10022 phone: (800) 829-0500 contact: info@lighthouse.org lighthouse.org

Disability

Genetic Alliance

Miracle Ear Children’s Foundation

5000 Cheshire Lane, North Minneapolis, MN 55446 phone: (877) 268-4264 miracleear.com/childrenrequest.aspx

Provides hearing aids to children whose families do not qualify for public assistance. Offers information on alternative communication and offers a variety of educational materials and brochures.

National Dissemination Center for Children with Disabilities 1825 Connecticut Ave NW Washington, DC 20009 phone: (800) 695-0285 contact: nichcy@fhi360.org nichcy.org

Information and referrals to assist parents, educators, and caregivers in helping children and teens with disabilities participate as fully as possible at school, at home, and in their community. Answers questions, matches families with common concerns, maintains a database of information. Offers free pamphlets and information on disabilities, and the rights of disabled children.

National Federation of the Blind 200 East Wells Street Baltimore, MD 21230 phone: (410) 659-9314 contact: nfb@nfb.org nfb.org

Provides information and referral services, scholarships, publications, aids and adaptive equipment, advocacy services and support for the blind and their families.

Provides helpful information and resources to enhance the quality of life for children and adults with disabilities. Support services, information, resources, educational materials, and inclusive practices through various community events.

Informationand andResources Resources || 25 Information 31


National Lekotek Center 2001 N. Clybourn Ave,, 1st Floor Chicago, IL 60614 phone: (773) 528-5766 contact: lekotek@lekotek.org lekotek.org

Makes the world of play accessible to children with all types of disabilities through special play and learning centers with traditional toys, adapted toys, books and computers. Nationwide, there are 37 centers that offer family play sessions, toy lending libraries, Compuplay family computer centers, and other innovative community-specific programming.

National Information Center for Psych Central

contact: talkback@psychcentral.com psychcentral.com

Catalog of support groups and mailing list groups organized by disability and condition.

National Library Service for the Blind and Physically Handicapped The Library of Congress loc.gov/nls/

Free library program of Braille and audio materials circulated to eligible borrowers in the United States by postage-free mail. Includes a Kids Zone and links to local participating libraries.

Reach out and open the door that no one thought could be opened. Life is behind it. -Kelly Ann Rothaus

26 32 ||Information Informationand andResources Resources

National Rehabilitation Information Center 8400 Corporate Drive, Suite 500 Landover, MD 20785 phone: (800) 346-2742 TTY: (301) 495-5989 contact: heitechservices.com naric.com

Information center focusing on disability and rehabilitation issues and research. Provides reference and referral services as well as custom database searches of the REHABDATA bibliographic database. Provides information on prosthetics, equipment and supplies. Produces the REHABDATA database (a free newsletter on disability and rehabilitation research and resources) and free resource guides.

Professional Association of Therapeutic Horsemanship International P.O. Box 33150 Denver, CO 80233 phone: (800) 369-7433 contact: pathintl@pathintl.org pathintl.org

Fosters therapeutic equine activities through education, communication, standards and research for people with and without disabilities. Promotes more than 650 equine facilitated therapy and activity programs in the United States and Canada.

U.S. Department of Health & Human Services – Office on Disability hhs.gov/od/

Disability topics including Americans with Disabilities Act, housing, education, employment, children & youth, and community integration.

United Ostomy Association P.O. Box 512 Northfield, MN 55057-0512 phone: (800) 826-0826 contact: info@ostomy.org ostomy.org

Information and support dedicated to complete rehabilitation of all ostomates.

Wheel to Walk Foundation P.O. Box 20146 Portland, OR 97294 phone: (503) 257-1401 contact: info@wheeltowalk.com wheeltowalk.com

Helps families obtain funding for essential equipment from their insurance companies from leg braces or wheelchairs to home care.

Wheelchair Foundation

3700 Blackhawk Road Danville, CA 94506 phone: (877) 378-3839 contact: info@wheelchairfoundation.org wheelchairfoundation.org

Leads an international effort to deliver a wheelchair to every man, woman and child in the world who needs one. For those individuals, the Wheelchair Foundation offers freedom, selfreliance, mobility and hope.


A listing of registries offering donor and transplant information. Many organizations will also help families with fundraising efforts if transplants are not covered through insurance. American Kidney Fund

6110 Executive Blvd., Suite 1010 Rockville, MD 20852 phone: (800) 638-8299 contact: helpline@akfinc.org akfinc.org

Provides direct financial aid to needy kidney patients. It also provides information on organ donations and kidney related diseases. Some of the services provided: patient grants, patient emergency funds, children’s camp grants, pharmacy programs and equipment.

American Liver Foundation 39 Broadway, Suite 2700 New York, NY 10006 phone: (800) 465-4837 contact: info@liverfoundation.org liverfoundation.org/abouttheliver/ info/transplant

Facilitates, advocates and promotes education, support and research for the prevention, treatment and cure of liver disease. Site includes information on liver disease and links to local chapters.

American Organ Transplant Association P.O. Box 418 Stillwell, KA 66085 phone: (713) 344-2402 aotaonline.org

Provides assistance to transplant recipients and their families, including airfare and bus tickets, advice on fund raising and establishing funds.

Be The Match

3001 Broadway Street NE, Suite 100 Minneapolis, MN 55413-1753 phone: (800) 627-7692 marrow.org

Facilitates life-saving blood stem cell transplants for patients who do not have a donor in their family. They provide the products and services that bring patients and donors together through life-saving technology, manage a large registry of volunteer stem cell donors and cord blood units, work to increase access to transplantation through research, advocacy, and public and professional education.

Blood & Marrow Transplant Information Network 2310 Skokie Valley Road, Suite 104 Highland Park, IL 60035 phone: (847) 433-3313 contact: help@bmtinfonet.org bmtinfonet.org

Provides accurate and easy-tounderstand information on blood and marrow transplants. Databases to find doctors, drug information, donors, and transplant centers.

Caitlin Raymond International Registry

Bone Marrow Donor Registry UMass Memorial Medical Center 55 Lake Avenue, North Worchester, MA 01655 phone: (800) 726-2824 contact: info@crir.org crir.org

Transplant and Donor Programs

Transplant and Donor Programs

Assists those with leukemia, aplastic anemia and other blood-related disorders in finding compatible bone marrow donors.

Children’s Liver Association for Support Services

25379 Wayne Mills Place, Suite 143 Valencia, CA 91355 phone: (877) 679-8256 classkids.org

Dedicated to serving the emotional, educational, and financial needs of families coping with childhood liver disease and transplantation. Includes an online newsletter and library.

Children’s Organ Transplant Association 2501 West Cota Drive Bloomington, IN 47403 phone: (800) 366-2682 contact: cota@cota.org cota.org

Support and financial assistance to children needing organ and tissue, including bone marrow transplants. Fundraising guidance for families and communities with transplant-needy individuals. Negotiates with hospitals and transplant centers on behalf of patients. Will send a representative at no cost into the individual’s community to initiate and organize fundraising activities. Information and Resources | 27


Cord Blood Registry cordbloodeducationcenter. blogspot.com

Offers information on how to find a private cord blood bank where you can store cord blood for family members, as well as basic cord blood transplant information

ExploreBMT.org

3001 Broadway Street NE, Suite 100 Minneapolis, MN 55413 phone: 888-999-6743 contact: explorebmt@nmdp.org explorebmt.org

Extensive information about transplant, emotional and physical health, and life after transplant. A searchable database of various resources.

Fred Hutchinson Cancer Research Center 1100 Fairview Ave. N Seattle, WA 98109 phone: (800) 804-8824 contact: hutchdoc@fhcrc.org fhcrc.org

A comprehensive, clinical, and consortium cancer center, providing bone marrow and stem cell transplantation information. Provides treatment and support information.

Help Hope Live

All the statistics in the world can’t measure the warmth of a smile. -Chris Hart

100 Matsonford Road, Suite 100 Radnor, PA 19087 phone: (800) 642-8399 contact: NTAF@transplantfund.org helphopelive.org

Resources for all organ and tissue transplant patients, their families, and the professionals who treat them. Provides educational information, fundraising expertise for families raising money for transplants, and financial support to patients through medical assistance grants.

National Bone Marrow Transplant Link

20411 W. 12 Mile Road, Suite 108 Southfield, MI 48076 phone: (800) 546-5268 contact: nbmtlink@mciworld.com nbmtlink.org

Resources to help patients, caregivers and families cope with the social and emotional challenges of bone marrow/stemcell transplant from diagnosis through survivorship by providing vital information and personalized support services.

28 | Information and Resources

National Foundation for Transplants

5350 Poplar Avenue, Suite 430 Memphis, TN 38119 phone: (800) 489-3863, (901) 684-1697 contact: info@transplants.org transplants.org

Financial assistance nationwide for bone marrow, stem cell, and cord blood patients for transplant-related care/medication.

Organ Transplantation: MedlinePlus.gov nlm.nih.gov/medlineplus/ organtransplantation.html

Links to information on organ transplantation. Click on each type of organ to go to a separate page on transplant of the specific organ.

Transplant Recipients International Organization

2100 M Street NW, #170-353 Washington, DC 20037-1233 phone: (800) TRIO-386 contact: triointl@aol.com trioweb.org

Provides educational materials regarding transplantation, donor awareness, and financial and insurance issues relevant to transplants. Provides educational scholarships; has a toll free telephone support network which links candidates, recipients and their families to peer interaction; publishes LifeLines, a bi-monthly newsletter available online, composed of articles and information about donation and transplantation; and hosts an annual conference.

United Network for Organ Sharing phone: (888) 894-6361 unos.org

Maintains, updates, and provides transplantation and donation information to patients, family members, friends, potential donors and medical professionals. Information may be requested on topics such as: the transplantation and donation process; national and center-specific transplant survival rates; Organ Procurement Organization recovery rates; number of transplants by organ at each transplant center. Offers patient information kits to assist patients, family members and friends in making informed and knowledgeable decisions about organ transplantation.


Resources regarding home care, assistive equipment, home nursing, respite care, care-giving support, and related services. Abledata

8630 Fenton St., Suite 930 Silver Spring, MD 20910 phone: (800) 227-0216 TTY: (301) 608-8912 contact: abledata@orcmacro.com abledata.com

Information on thousands of assistive devices for home health care, from eating utensils to wheelchairs. Prices, names, and addresses of suppliers.

Cancer Care, Inc.

275 7th Avenue New York, NY 10001 phone: (800) 813-4673 contact: info@cancercare.org cancercare.org

Information and referral to local community resources. Supplementary financial assistance for home care, transportation, and pain medication.

Caregiver Survival Resources

3350 Griffin Road Ft Lauderdale, FL 33312 phone: (954) 893-0550 fax: (954) 893-1779 contact: info@caregiver.com caregiver911.com

Comprehensive list linking caregiving information and services for general issues and specific chronic illnesses.

Caregivers Action Network 10400 Connecticut Ave #500 Kensington, MD 20895-3944 phone: (301) 942-6430 fax: (301) 942-2302 contact: info@caregiveraction.org caregiveraction.org

Education, support, respite care and advocacy for caregivers. Toll-free information line provides referrals to caregiver support groups and a resource guide. Distributes a newsletter with tips on caregiving.

Center for Family Caregivers

Home Care

Home Care

familycaregivers.org

Helps family members learn about caregiving through “Kits for Caregivers” program, online support groups, and weekly free teleclasses. The Center also will develop and implement at-home work opportunities for family caregivers.

CureSearch

4460 East-West Highway Bethesda, MD 20814 phone: (800) 458-6223, ext. 196 curesearch.org/parentsfamilies/ beyondtreatment/endoflife

Provides resources and techniques to help in difficult of times, when the focus is on providing both physical and emotional comfort to a child and their family, and discovering ways to preserve their dignity and memory. Links include: palliative care, hospice, and talking with your child.

E. F. Moody

efmoody.com/longterm/ respitechecklist.html

Respite caregiver’s checklist.

National Alliance for Caregiving

4720 Montgomery Lane, 2nd Floor Bethesda, MD 20814 contact: info@caregiving.org caregiving.org

Resources for family caregivers and the professionals who help them.

National Association for Home Care & Hospice 228 Seventh Street SE Washington, DC 20003 phone: (202) 547-7424 contact: webmaster@nahc.com nahc.org

Information on home care and hospice. Offers referrals to local bereavement support groups in your area. Publications available.

Informationand andResources Resources|| 29 Information 35


Oley Foundation

214 Hun Memorial, MC-28 Albany Medical Center Albany, NY 12208-3478 phone: (800) 776-OLEY oley.org

Provides education, outreach services, conference activities, and emotional support for people with home IV and tube feedings, and their families.

Pediatric Services of America

3720 Davinci Court, Suite 200 Norcross, GA 30092 phone: (770) 441-1580 psahealthcare.com

Comprehensive services designed to address the full range of home health care needs of pediatric patients, particularly the needs of medically fragile children dependent upon sophisticated nursing care and medical technology.

Visiting Nurse Association of America 601 13th Street NW, Suite 601 Washington, DC 20005 phone: (888) 866-8773 contact: webadmin@vnaa.org vnaa.org

When we truly care for ourselves, it becomes possible to care far more profoundly about other people. -Eda Leshan

30 ||Information 36 Informationand andResources Resources

More than 500 nonprofit visiting nurse associations provide community-based home care services, including skilled nurses, therapists, and home health care aids.


Online resources that help you research doctors, facilities, medicines, clinical trials, medical terms, and lab tests. AMA Doctor Finder

Healthgrades.com

Professional information about virtually every licensed physician in the United States.

Search for or check on an oncologist: when and where they went for medical school, training (residency), license status, or disciplinary action.

extapps.ama-assn.org/doctorfinder/ html/patient.jsp

American Pediatric Surgical Association

111 Deer Lake Road, Suite 100 Deerfield, IL 60015 phone: (847) 480-9576 fax: (847) 480-9282 contact: eapsa@eapsa.org eapsa.org

Information on pediatric surgeons.

Best Doctors bestdoctors.com

Provides answers from worldrenowned doctors, to help people be sure they are receiving the right care. Ensuring that individuals have the correct diagnosis and the best treatment can significantly improve the quality of care.

Cancer 411 cancer411.org

Provides a search engine for available clinical trials.

Castle Connolly castleconnolly.com

Healthcare research and information company founded in 1991 by a former medical college board chairman and president, Castle Connolly’s goal is to help guide consumers to America’s top doctors and top hospitals.

Cure Research Foundation P.O. Box 3782 Westlake Village, CA 91359 phone: (805) 498-0185 cancure.org

Dedicated to the advancement of healing without drugs. Has a directory of alternative clinics.

DocFinder DocBoard.org

Contains the licensing background and disciplinary information of physicians and other health care practitioners in addition to physician profile information from states that have passed physician profile laws.

healthgrades.com/find-a-doctor

Joint Commission on Accreditation of Healthcare Organizations One Renaissance Blvd Oakbrook Terrace, IL 60181 phone: (630) 792-5000 fax: (630) 792-5005 contact: customerservice@jcaho.org jcaho.org

Reference and Accreditation

Reference and Accreditation

This joint commission of the American Hospital Association, American Medical Association, College of Physicians, American College of Surgeons, and the American Dental Association, establishes standards for hospital care and accredits hospitals that meet its standards.

KidWX

P.O. Box 8262 Reston, VA 20195 phone: (855) 465-4399 kidwx.com

An anonymous information portal which provides the ability for parents and caregivers to search and read reviews written by other parents and caregivers about service providers.

Lab Tests Online labtestsonline.org

A public resource on clinical lab testing from the laboratory professionals who do the testing.

Medterms

Medterms.com

Medical reference dictionary for MedicineNet.com. Their doctors define difficult medical language in easy-to-understand explanations of over 16,000 medical terms.

RxList

rxlist.com

RxList is an online medical resource dedicated to offering detailed and current pharmaceutical information on brand and generic drugs. Founded by pharmacists in 1995, RxList is the premier Internet Drug Index resource. Information and Resources | 31


WebMD

doctor.webmd.com

Provides a tool to compare hospitals and offers information about process-of-care measures, patient satisfaction measures, readmission rates, mortality rates, and average reimbursement rates.

Why Not the Best whynotthebest.org

Free resource for health care professionals interested in tracking performance on various measures of health care quality. It enables organizations to compare their performance against that of peer organizations, against a range of benchmarks, and over time. Case studies and improvement tools spotlight successful improvement strategies of the nation’s top performers. A regional map shows performance at the county, HRR, state, and national levels.

In the face of uncertainty, there is nothing wrong with hope. -Bernie S. Siegel

38 Informationand andResources Resources 32 || Information


A listing of groups that offer complementary and alternative therapy options for cancer patients. Alternative Health Consultant Arthur C. Brown

24564 Lincoln Ct. Suite 137 Farmington Hills, MI 48335 phone: (248) 426-8450 fax: (530) 688-6627 contact: altcancer@yahoo.com alternative-cancer.net

Internet guide to alternative cancer therapy, doctors, clinics and hospitals. .

American Holistic Medical Association

27692 Chagrin Blvd., Suite 206 Woodmore, OH 44122 phone: (216) 292-6644 contact: info@holisticmedicine.org holisticmedicine.org

Professional organization of holistic health care practitioners, healthrelated organizations, businesses, and interested individuals. The AHMA supports research and educational projects that promote holistic medicine.

American Institute for Cancer Research Development Office 1759 R Street NW Washington, DC 20090 phone: (800) 843-8114 contact: aicrWEB@aicr.org aicr.org

Not only funds hundreds of research projects on nutrition and cancer, but also provides information to both physicians and the general public. Provides a variety of services: toll-free nutrition hotline; series of consumer seminars on reducing cancer risk; a quarterly newsletter with articles on research updates, health tips, and nutrition ideas and recipes; four seasonal cookbooks featuring recipes from appetizers to desserts that follow cancer risk-reduction dietary guidelines; video on nutrition and cancer; and physician’s information program that supplies doctors’ offices with AICR educational booklets.

American Massage Therapy Association

500 Davis Street, Suite 900 Evanston, IL 60201-4695 phone: (877) 905-0577 fax: (847) 864-5196 contact: info@amtamassage.org amtamassage.org

AMTA’s Find a Massage Therapist® national locator service helps consumers and medical professionals find qualified massage therapists in their area.

Annie Appleseed Project 7319 Serrano Terrace Delray Beach, FL 33446 phone: (561) 749-0084 contact: info@annieappleseedproject.org annieappleseedproject.org

Information, education, advocacy and awareness on complementary, alternative, and natural cancer therapies. Website designed to help consumers make fully informed decisions.

Complementary and Alternative Medicine

Complementary and Alternative Medicine

Arbor Nutrition Guide arborcom.com

A comprehensive nutrition site with links to many nutrition websites.

CanHelp

P.O. Box 1678 Livingston, NJ 07039 phone: (800) 364-2341 contact: joan@canhelp.com canhelp.com

Consultant for mainstream and complementary therapies. Offers a resource service for people with cancer, which has been directed by medical writer Patrick McGrady since 1983. Clients receive: a computer printout of disease specific research and treatment information from medical databases, a personal interpretation of this information, medical reports, and synopses of conversations concerning your case with CanHelp’s medical advisors. Fee for service.

Information Informationand andResources Resources| | 39 33


Cancer Care

275 7th Avenue, Floor 22 New York, NY, 10001 phone: (800) 813-4673 contact: info@cancercare.org cancercare.org

Basic information on alternative/ complementary cancer treatment with links to books.

The Cancer Cure Foundation

P.O. Box 3782 Westlake Village, CA 91359 phone: (805) 498-0185 cancure.org

Dedicated to the advancement of healing without drugs. Has a directory of alternative clinics.

Cancer Nutrition Center

phone: (310) 766-8597 contact: info@cancernutrition.com cancernutrition.com/

Offers nutrition information for cancer survivors.

Cancer Research Institute

Find a place inside where there's joy, and the joy will burn out the pain. -Joseph Campbell

One Exchange Plaza 55 Broadway, Suite 1802 New York, NY 10006 phone: (800) 992-2623 fax: (212) 832-9376 contact: info@cancerresearch.org cancerresearch.org

Funds research on increasing the body’s immune response to cancer through the development of immune response modifiers, monoclonial antibodies, and vaccines. Also publishes and distributes (free of charge), Science Highlights, a quarterly newsletter of new developments in cancer, immunology, and AIDS. Contains mostly conventional medical news, although some unorthodox treatments are also covered.

Complementary/ Integrative Medicine Education Resources

MD Anderson Cancer Center 1515 Holcombe Boulevard Houston, TX 77030 phone: (877) 632-6789 mdanderson.org/departments/cimer

Dedicated to investigating the effectiveness of alternative/ complementary therapies used for cancer prevention and control. Offers information and links to resources related to alternative medicine use in cancer patients.

40 Informationand andResources Resources 34 || Information

Linus Pauling Institute of Science and Medicine 307 Linus Pauling Science Center Corvallis, OR 97331-6512 phone: (541) 737-5075 fax: (541) 737-5077 contact: lpi@oregonstate.edu lpi.oregonstate.edu/

Extensive research on the use of Vitamin C and other nutrients in the treatment and prevention of cancer and other degenerative diseases. Publishes a quarterly newsletter and an extensive array of research reports and booklets on alternative treatments of disease and preventive techniques.

National Center for Complementary and Alternative Medicine

9000 Rockville Pike Bethesda, MD 20892 phone: (888) 644-6226 TTY: (866) 464-3615 contact: info@nccam.nih.gov nccam.nih.gov

Information on alternative medicine, including cancer treatments and comfort management. Supports basic and applied research and training, and disseminates information on complementary and alternative medicine to practitioners and the public.

Oasis of Hope

phone: (888) 500-4673 fax: (619) 690-8410 contact: health@oasisofhope.com oasisofhope.com

Resource to discover the benefits of Contreras Care and how to prevent illness with natural medicine (alternative to surgery, radiation and chemotherapy) with emphasis on nutrition, raw food diets, juicing and a healthy life style.

People Against Cancer 604 East Street P.O. Box 10 Otho, IA 50569 phone: (515) 972-4444 fax: (515) 972-4415 contact: info@peopleagainstcancer.net peopleagainstcancer.net

Provides treatment options for people with cancer. Answers complex questions about treatment alteratives.


Organizations that may offer support and help transcend cultural and language barriers associated with medical care issues. Diversity Rx

contact: rcchc@aol.com diversityRX.org

Promotes language and cultural competence to improve the quality of health care for minority, immigrant, and ethnically diverse communities.

Intercultural Cancer Council

Baylor College of Medicine One Baylor Plaza Houston, TX 77030-3411 phone: (713) 798-5420 contact: info@iccnetwork.org iccnetwork.org

Promotes policies, programs, partnerships and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations.

Jacob’s Heart Children’s Cancer Association 2007 Freedom Blvd. Freedom, CA 95019 phone: (831) 724-9100 contact: info@jacobsheart.org jacobsheart.org

Translation and information/referral services can be provided in Spanish and English, as well as nutritional information based on the special needs of children with cancer.

KidsHealth

kidshealth.org

Provides doctor-approved health information about children from before birth through adolescence. Site has separate areas for kids, teens, and parents - each with its own design, age-appropriate content, and tone. Thousands of in-depth features, articles, animations, games, and resources - all original and all developed by experts in the health of children and teens.

Max Foundation

110 W. Dayton, Suite 205 Edmonds, WA 98020 phone: (888) 462-9368 contact: info@themaxfoundation.org themaxfoundation.org

Nonprofit dedicated to improve the quality of life of patients with leukemia and other blood related

diseases, especially children of Hispanic and Latin American origin. Provides information about treatment options, as well as emotional and financial support.

National Alliance for Hispanic Health

1510 Sixteenth Street NW Washington, DC 20036 phone: (202) 387-5000 contact: alliance@hispanichealth.org hispanichealth.org

Intercultural Resources

Intercultural Resources

Provides access to information for improving the health of the Hispanic community. Cancer information also available.

National Cancer Institute – en espanol

6116 Executive Boulevard, Suite 300 Bethesda, MD 20892-8322 phone: (800) 422-6237 TTY: (800) 332-8615 contact: cancergovstaff@mail.nih.gov cancer.gov/espanol

General and specific information on cancer written in Spanish.

Native American Cancer Research

3110 South Wadsworth, Suite 103 Denver, CO 80227 phone: (800) 537-8295 fax: (303) 975-2463 contact: info@natamcancer.net natamcancer.org

Dedicated to helping improve the lives of Native American cancer patients and survivors. Numerous resources available.

Office of Minority Health

P.O. Box 37337 Washington, D.C. 20013-7337 phone: (800) 444-6472 fax: (240) 453-2883 contact: info@minorityhealth.hhs.gov minorityhealth.hhs.gov/

Part of the U.S. Department of Health and Human Services. Dedicated to improving the health of racial and ethnic minority populations through the department of health policies and programs.

Information and Resources | 35


Notes:

36 | Information and Resources


Cancer often imposes heavy burdens on families. Many are impacted and need help with jobs, money, or insurance policies. Other than financial help, many also need assistance with legal issues, air travel, ground transporation, prescriptions and even financial aid for continuing education. This section offers resources that may help with a variety of needs and unique situations.

Aid and Assistance

Aid and Assistance

Aid and Assistance | 37


Financial Assistance Financial difficulties are hard, especially during times of crisis. These national organizations and resources may offer financial assistance. Check with your local support organizations, churches or social service organizations as many have financial funds for local citizens in need. Families should discuss any concerns regarding healthcare costs with their physician, medical social worker, or the business office at your hospital or clinic. Depending on your circumstances, hospitals may be able to reduce bills or set up payment plans. ASK Childhood Cancer Foundation 5211 W. Broad Street Richmond, VA 23230 phone: (804) 658-5910 askweb.org

Nonprofit organization that provides financial, spiritual, social and emotional support directly to over 1,000 children and their families annually.

American Cancer Society 250 Williams St. NW Atlanta, GA 30303 phone: (800) 227-2345 cancer.org

The most wasted of all days is one without laughter. -E.E. Cummings

Local offices may offer reimbursement for expenses related to cancer treatment. May include help with transportation, medicine, and medical supplies. Offers programs to help cancer patients, family members, and friends cope with the emotional challenges they face.

American Kidney Fund

11921 Rockville Pike, Suite 300 Rockville, MD 20825 phone: (800) 638-8299 fax: (301) 881-0898 contact: helpline@kidneyfund.org kidneyfund.org

Provides direct financial aid to kidney patients in need.. Also provides information on organ donations and kidney related diseases. Some of the services provided include: patient grants, patient emergency funds, children’s camp grants, pharmacy programs and equipment.

38 | Aid and Assistance

The Andrew McDonough B+ Foundation Wilmington, DE 19803 bepositive.org

Provides financial support to families of critically ill children and funds medical research for pediatric cancers.

Association of Jewish Family and Children’s Agencies, Intercultural Resources 5750 Park Heights Ave Baltimore, MD 21215 phone: (800) 634-7346 contact: AJFCA@ajfca.org ajfca.org

Some 145 local member agencies may provide help for medical equipment, medical supplies, prescribed medication, and transportation to medical care.

The Association of Junior Leagues International, Inc.

80 Maiden Lane, Suite 305 New York, NY 10038-4609 phone: (212) 951-8300 contact: info@ajli.org ajli.org

Some local Junior Leagues may provide financial assistance on a special project basis. Contact your local Junior League to see if it can help you.


515 Madison Ave., Suite 1130 New York, NY 10022 phone: (212) 838-3029 contact: theBMF@BoneMarrow.org bonemarrow.org

Offers financial support to families experiencing bone-marrow transplantation at one of it’s affiliated hospitals. Also provides basic information about bone-marrow transplants.

Association of Maternal and Child Health Programs 2030 M Street, NW, Suite 350 Washington, DC 20036 phone: (202) 775-0436 fax: (202) 775-0061 contact: info@amchp.org amchp.org

Provides financial grants to states for direct medical and related services for children with disabilities, including chronic and terminal illnesses. Every state has its own plan. You can contact this organization for information on your child’s eligibility for services as well as information on state specific programs.

Cancer Care, Inc.

275 7th Ave New York, NY 10001 phone: (800) 813-4673 fax: (212) 719-0263 contact: info@cancercare.org cancercare.org

Range of support services to cancer patients and their families, free of charge. Supplementary financial assistance for home care, transportation, and pain medication.

Catholic Charities, U.S.A. 2050 Ballenger Avenue Alexandria, VA 22314 phone: (703) 549-1390 fax: (703) 549-1656 contact: info@catholiccharitiesusa.org catholiccharitiesusa.org

Funds some medical care. Contact the Catholic Charities nearest you to see what kind of assistance they can provide. If you have trouble locating your local Catholic Charities agency, contact the national office.

Centers for Medicare & Medicaid Services 7500 Security Blvd. Baltimore, MD 21244-1850 phone: (877) 267-2323 TTY: (866) 226-1819 cms.hhs.gov

Provides information on Medicare and Medicare benefits.

Chai Lifeline

151 West 30th Street New York, NY 10001 phone: (877) 242-5433 contact: info@chailifeline.org chailifeline.org

Offers a large network of free health support services that provide invaluable practical, psychological and emotional assistance for seriously ill children and their families.

Children’s Liver Association for Support Services

Cancer Fund of America

25379 Wayne Mills Place, Suite 143 Valencia, CA 91355 phone: (877) 679-8256 fax: (661) 263-9099 contact: admin@classkids.org classkids.org

Helps cancer patients, hospices, and other nonprofit healthcare providers by sending products free of charge directly to them. Provides financial assistance to families.

Civitan International

2901 Breezewood Lane Knoxville, TN 37921-1099 phone: (800) 578-5284 contact: info@cfoa.org cfoa.org

Cancer Survivors Fund P.O. Box 792 Missouri City, TX 77459 phone: (281) 437-7142 contact: csf@cancersurvivorsfund.org cancersurvivorsfund.org

Provides medical expense assistance for the benefit of people diagnosed with cancer, receiving treatment for cancer, or in remission.

Financial Assistance Financial Assistance

Bone Marrow Foundation

Provides financial aid for families of pediatric liver patients. Typical types of financial assistance include a parent’s food allowance during their child’s hospitalization, telephone service for a child awaiting transplant, or transportation expenses for a clinic visit. P.O. Box 130744 Birmingham, Alabama 35213-0744 phone: (800) 248-4826 contact: civitan@civitan.org civitan.org

Local chapters may help families purchase prescription medications, medical equipment, and supplies for children with mental developmental disabilities. Civitan chapters are also experienced in directing families to other sources of financial help. Aid and Assistance | 39


Council for Health and Human Services Ministries 700 Prospect Avenue Cleveland, OH 44115 phone: (866) 822-8224 ext. 2250 chhsm.org

Makes referrals to sources of financial assistance for medical care and other needs.

Disability Expert

contact: webmaster@ thedisabilityexpert.com thedisabilityexpert.com

Provides information about applying for Social Security disability benefits.

Disabled Children’s Relief Fund P.O. Box 89 Freeport, NY 11520 phone: (516) 377-1605 dcrf.com

Hope is a journey, not a destination; its value lies in the exploration. Hope is the way we live life and the journey of hope should last until we end. -Davis Kessler

Advocates for the rights and needs of disabled children, including those disabilities brought on by cancer treatments and side effects. Provides cash grants for children, with preference given to families without health insurance.

Elks USA

2750 North Lake View Avenue Chicago, IL 60614 phone: (773) 755-4700 elks.org

Local Elks lodges may provide help to children with chronic illnesses or disabilities. Contact your local Elks lodge for more information.

First Hand Foundation

2800 Rockcreek Parkway Kansas City, MO 64117 Phone: (816) 201-1569 contact: firsthandfoundation@cerner.com cerner.com/firsthand/

Assists individual children with health-related needs when insurance and other financial resources have been exhausted.

General Grand Chapter, Order of the Eastern Star

1618 New Hampshire Avenue, NW Washington, DC 20009-2549 phone: (202) 667-4737 contact: RWGSecretary@EasternStar.org easternstar.org

State or local chapters can assist in setting up a fund to provide for medical equipment, supplies, prescription medications, and/or medical transportation for children with chronic illnesses or disabilities. 40 | Aid and Assistance

Income Tax Deductions

irs.ustreas.gov

Medical costs that are not covered by insurance policies sometimes can be deducted from annual income before taxes. Examples of tax deductible expenses might include mileage for trips to and from medical appointments, out of pocket costs for treatment, prescription drugs or equipment, and the cost of meals during lengthy medical visits. The local IRS office, tax consultants, or certified public accountants can determine medical costs that are tax deductible. Your local IRS office is available in your local telephone directory.

Kelly Anne Dolan Memorial Fund

602 S. Bethlehem Pike Building D, 2nd Floor Ambler, PA 19002 phone: (215) 643-0763 contact: info@kadmf.org kadmf.org

Resource center providing education, advocacy and information for the uninsured needs of families caring for seriously ill and physically challenged children. Financial assistance available to families whose children are living in or cared for in Pennsylvania, New Jersey, or Delaware.

Kiwanis International

3636 Woodview Trace Indianapolis, IN 46268-3196 phone: (800) 549-2647 fax: (317) 879-0204 contact: kiwanismail@kiwanis.org kiwanis.org

Local clubs may have funding available. Clubs could also be encouraged to establish a fund for emergency needs for medical equipment, supplies, prescription medications, and transportation for local children with chronic illnesses or disabilities. *AVAILABLE IN OTHER LANGUAGES

Knights of Columbus

1 Columbus Plaza New Haven, CT 06510-3326 phone: (203) 752-4000 contact: info@kofc.org kofc.org

Local chapters may provide financial assistance to families for medical care for their children. Do not have to be Catholic. *AVAILABLE IN OTHER LANGUAGES


1311 Mamaroneck Ave. White Plains, NY 10605 phone: (941) 949-5213 contact: infocenter@lls.org lls.org

Offers financial aid to people who have leukemia, non-Hodgkin’s lymphoma, Hodgkin’s disease, or multiple myeloma by aiding in the payments of uncovered outpatient expenses, including prescriptions, blood transfusions, and radiation. Callers may request a booklet describing LLS’s Patient Aid Program. *AVAILABLE IN OTHER LANGUAGES

Lions Club International

300 W 22nd Street Oak Brook, IL 60523-8842 phone: (630) 571-5466 contact: lcif@lionsclubs.org lionsclubs.org

Local chapters can help provide eye care, with a priority given to visual impairments. Some chapters provide eye examinations, eyeglasses, prescription eye medications, artificial eyes, emergency hospital care, and surgery and hospital fees as funds permit.*AVAILABLE IN OTHER LANGUAGES

Lucy’s Love Bus lucyslovebus.org

Delivers comfort to children with cancer by paying for any therapy that helps to balance traditional cancer care and improves the quality of life for the child. Offer grants up to $1,000 for any child in the US between the ages of birth and 21- years-old who is coping with a cancer diagnosis or late effects of cancer treatment.

National Children’s Cancer Society

One South Memorial Drive, #800 St. Louis, MO 63102 phone: (800) 532-6459 children-cancer.com

Helps children with cancer and their families by providing financial and fundraising assistance related to medical treatment such as lodging and travel. Provides advocacy support interceding on behalf of children with bills, home care needs, insurance companies, hospitals, and other agencies to negotiate reasonable financial solutions for a child’s care. Support services and education about childhood cancer and nutrition is available as well.

National Hemophilia Foundation

116 West 32nd Street, 11th Floor New York, NY 10001 phone: (800) 424-2634 fax: (212) 328-3777 contact: info@hemophilia.org hemophilia.org

Has emergency assistance funds that can pay for medical expenses (e.g., prescribed medication, wheelchair repair). Resources for financial aid that may be available for your particular situation.

Patient Advocate Foundation

421 Butler Farm Road Hampton, VA 23666 phone: (800) 532-5274 fax: (757) 873-8999 contact: help@patientadvocate.org patientadvocate.org

Financial Assistance Financial Assistance

Leukemia & Lymphoma Society

Provides professional case managment services to Americans with chronic life threatening and debilitating illnesses. Serves as a liaison between the patient and insurer.

Ruritan National

P.O. Box 487 Dublin, VA 24084 phone: (877) 787-8727 contact: office@ruritan.org ruritan.org

Local clubs help families pay for medical equipment and supplies, prescription medications, and medical transportation.

Salvation Army National Headquarters 615 Slaters Lane P.O. Box 269 Alexandria, VA 22313 phone: (703) 684-5500 salvationarmyusa.org

Local units can offer emergency financial assistance to families.

Shriners International and Shriners Hospitals for Children 2900 Rocky Point Drive Tampa, FL 33607-1460 phone: (800) 237-5055 shrinershq.org

Provides free care to children with orthopedic problems or burns. Does not offer direct financial help for outpatient medications or medical transportation.

Aid and Assistance | 41


Social Security Administration

Social Security, Suite 10001 5 Park Center Court Owings Mills, MD 21117 phone: (800) 772-1213 TTY: (800) 325-0778 ssa.gov

Provides monthly income for eligible individuals. Some states acknowledge cancer needs. Information on Medicare available by calling your local office for details and availability. *AVAILABLE IN OTHER LANGUAGES

Special Love

117 Youth Development Court Winchester, VA 22602 phone: (888) 930-2707 speciallove.org

Offers college scholarships for kids with cancer and emergency funds for families in need.

St. Jude Children’s Hospital

Happiness resides not in possesions, and not in gold, happiness dwells in the soul. -Democritus

262 Danny Thomas Place Memphis, TN 38105 phone: (901) 595-3300 stjude.org

Offers free treatment, travel, and lodging for eligible children diagnosed with cancer. Parents wishing to have their child treated at St. Jude Hospital must have the child’s treating oncologist contact a St. Jude Hospital physician. Final acceptance occurs when the patient is deemed eligible and is enrolled in a specific protocol.

Traveler’s Aid International 1612 K Street NW, Suite 206 Washington, DC 20006 phone: (202) 546-0599 contact: info@travelersaid.org travelersaid.org/

Local agencies help individuals and families in crisis; however, only shortterm crisis intervention is available. This could include a situation in which a child had a medical emergency.

United Methodist Association of Health and Welfare Ministries

2800 W. Main Street Tupelo, MS 38801 phone: (662) 269-2955 contact: info@umassociation.org umassociation.org

Member organizations may provide services or financial assistance. 42 | Aid and Assistance

United Healthcare Children’s Foundation P.O. Box 41 Minneapolis, MN 55400-0041 phone: (855) 698-4223 uhccf.org

Accepts grant applications from families who need financial assistance to cover medical services such as speech, physical or occupational therapy, prescriptions, and medical equipment.

Uniformed Service Organization P.O. Box 96322 Washington, DC 20090-6322 phone: (888) 484-3876 uso.org

International organization does not offer direct financial aid of any kind. For active duty service personnel, however, local USO organizations sponsor family and community centers to help families on a crisis intervention basis.

Wheelchair Foundation

3820 Blackhawk Road Danville, CA 94506 phone: (877) 378-3839 contact: info@wheelchairfoundation.org wheelchairfoundation.org

The Wheelchair Foundation is a nonprofit organization leading an international effort to deliver a wheelchair to every man, woman and child in the world who needs one.

Wigs for Kids

24231 Center Ridge Rd Westlake, OH 44145 phone: (440) 333-4433 contact: info@wigsforkids.org wigsforkids.org

Nonprofit organization supplies wigs to children under 18 who can’t afford hairpieces and are experiencing hair loss from chemotherapy, radiation, burns, alopecia or other medical conditions. Contact the above address for an application, and ask your child’s oncologist or social worker to verify need. When the wig is finished, a local hair salon can be requested to donate time for the final fitting.


Fundraising is another option to consider. Some families find that friends, family and community members are willing to contribute financially to a local fundraising effort if they are aware of a difficult situation. Children’s Organ Transplant Association

National Transplant Assistance Fund

Provides guidance to families and communities with transplant-needy individuals to raise the necessary funds for the transplants. Negotiates with hospitals and transplant centers on behalf of patients. Will send a representative at no cost into the individual’s community to initiate and organize fundraising activities.

Helps patients and their families organize, launch and sustain grassroots fundraising campaigns, providing fiscal accountability for the funds raised, and weekly disbursements for life-saving and life-sustaining medical care.

2501 West Cota Drive Bloomington, IN 47403 phone: (800) 366-2682 contact: cota@cota.org cota.org

Two Radnor Corporate Center 100 Matsonford Road, Suite 100 Radnor, PA 19087 phone: (800) 642-8399 transplantfund.org

Financial Assistance

Fundraising

Giveforward

giveforward.com

GiveForward provides free online fundraising pages allowing friends and family to raise money directly for a loved one when they need it the most. Set up a page in minutes with tips about how to fundraise successfully, share it with friends and instantly create a community of support. Giveforward will keep 7% of the total raised in order to cover operating costs.

National Children’s Cancer Society

One South Memorial Drive, Suite 800 St. Louis, MO 63102 phone: (314) 241-1600 children-cancer.com

Provides financial and fundraising assistance related to medical treatment such as lodging and travel. Support services and education about childhood cancer and nutrition is available as well.

Aid and Assistance | 43


Employment and Legal Assistance For various reasons families may need to consult legal counsel or employment agencies during or after a child’s battle with cancer. Cancer and Careers

contact: cancerandcareers@cew.org cancerandcareers.org

Empowers and educates people with cancer and their families to thrive in their workplace by providing advice, tools, and events.

Job Accommodation Network P.O. Box 6080 Morgantown, WV 26506-6080 phone: (800) 526-7234 TTY: (877) 781-9403 contact: jan@askjan.org jan.wvu.edu

Love is above all else, the gift of oneself. - Jean Anouilh

Facilitates the employment and retention of workers with disabilities by providing employers, employment providers, people with disabilities, their family members and other interested parties with information on job accommodations, selfemployment and small business opportunities.

Quackwatch

contact: sbinfo@quackwatch.com quackwatch.org

Combats health-related frauds, myths, misconduct, fads, and fallacies. Focuses on quackeryrelated information that is difficult or impossible to get elsewhere by a worldwide network of volunteers and expert advisors. Activities include: investigating questionable claims, answering inquiries, distributing publications, reporting illegal marketing, generating consumerprotection lawsuits, improving the quality of health information on the Internet, and attacking misleading advertising on the Internet. *AVAILABLE IN OTHER LANGUAGES.

44 | Aid and Assistance

U.S. Department of Labor

Frances Perkins Building 200 Constitution Avenue, NW Washington, DC 20210 phone: (866) 487-2365 TTY: (877) 889-5627 dol.gov

Administers a variety of Federal labor laws including those that guarantee workers’ rights to safe and healthful working conditions; a minimum hourly wage and overtime pay; freedom from employment discrimination; unemployment insurance; and other income support. *AVAILABLE IN OTHER LANGUAGES.

U.S. Equal Employment Opportunity Commission 131 M Street, NE Washington, DC 20507 phone: (202) 663-4900 TTY: (202) 663-4494 contact: info@eeoc.gov eeoc.gov

The U.S. Equal Employment Opportunity Commission enforces employment laws and provides oversight and coordination of all federal equal employment opportunity regulations, practices, and policies. *AVAILABLE IN OTHER LANGUAGES.


The following organizations may offer assistance and information about insurance issues and aid related directly to treatment needs. American Health Insurance Plans

Membership Department 601 Pennsylvania Avenue NW South Building, Suite 500 Washington, DC 20004 phone: (202) 778-3200 fax: (202) 331-7487 contact: ahip@ahip.org ahip.org

Insurance industry trade association that will provide information on insurance and health care issues.

Centers for Medicare and Medicaid Services 7500 Security Blvd. Baltimore, MD 21244-1850 phone: (877) 267-2323 TTY: (866) 226-1819 cms.hhs.gov

Provides information on Medicare hospice benefits.

Children’s Health Insurance Program: Family Voices

3701 San Mateo Blvd. NE, Suite 103 Albuquerque, NM 87110 phone: (888) 835-5669 contact: kidshealth@familyvoices.org

Resources, tips, brochures and a newsletter offering advocacy for children’s health care needs.

Department of Health and Human Services Hotline for the Office of the Inspector General 330 Independence Ave, SW Washington, DC 20201 phone: (800) 447-8477 TTY: (800) 377-4950 oig.hhs.gov/fraud/hotline/

U.S. government hotline for complaints regarding Medicare or Medicaid; provides assistance with issues of entitlements, benefits, insurance, and community resources.

First Hand Foundation

2800 Rockcreek Parkway Kansas City, MO 64117 phone: (816) 201-1569 contact: firsthandfoundation@cerner.com firsthandfoundation.org

Financial Assistance

Insurance and Medical Assistance

First Hand is a philanthropic, nonprofit foundation established to help children with health problems address financial situations and their healthcare.

Health Insurance Association of America 601 Pennsylvania Avenue NW South Building, Suite 500 Washington, DC 20004 phone: (202) 778-3200 contact: ahip@ahip.org hiaa.org

Offers assistance to people with a history of cancer in locating health insurance.

Insure Kids Now phone: (877) 543-7669 insurekidsnow.gov

National campaign to link the nation’s 10 million uninsured children – from birth to age 18 – to free and low-cost health insurance. Puts families in direct contact with their own state’s children’s health insurance program through this website.

Medical Information Bureau Incorporated

50 Braintree Hill Park, Suite 400 Braintree, MA 02184-8734 phone: (866) 692-6901 TTY: (866) 346-3642 contact: infoline@mib.com mib.com

Can send a copy of your medical records so that you can verify the information in them and correct any inaccuracies. Call MIB to find out the type of information needed to process your request.

Aid and Assistance | 45


National Association of Insurance Commissioners 1100 Walnut Street, Suite 1500 Kansas City, MO 64106-2197 phone: (816) 842-3600 naic.org

Offers help with situations in which you feel you or your family are not being treated fairly by your insurance carrier.

National Patient Advocate Foundation 725 15th St. NW, Tenth Floor Washington, DC 20005 phone: (202) 347-8009 email: action@npaf.org npaf.org

Provides legal consulting and referral services for patients confronting denial of insurance coverage, employment discrimination and/or need for negotiating support with public assistance programs through both state and federal agencies through their National Legal Resource Network.

You cannot hold back a good laugh any more than you can the tide. Both are forces of nature. -William Rotsler

46 | Aid and Assistance


The cost of paying for medications can be difficult. This section may have resources and programs to help pay for prescription drugs. Check with your oncologist for a pharmaceutical listing of your child’s medications. You may be able to contact each pharmaceutical or related company directly for additional help. Leukemia & Lymphoma Society

1311 Mamaroneck Ave., Suite 310 Whiteplains, NY 10605 phone: (914) 949-5213 fax: (914) 949-6691 lls.org

Offers financial assistance for drugs used in care, treatment, and/or control of disease.

National Organization for Rare Disorders

Medication Assistance Programs 55 Kenosia Avenue Danbury, CT 06813 phone: (800) 999-6673 fax: (203) 798-2291 contact: patientassistance@ rarediseases.org rarediseases.org/programs/ medication

Medication Assistance Program provides assistance to uninsured or under-insured individuals in securing life-saving and life-sustaining medications.

NeedyMeds, Inc.

P.O. Box 219 Gloucester, MA 01931 contact: info@needymeds.com needymeds.org

Provides information about patient assistance programs, which provide no cost prescription medications to eligible participants.

Pharmaceutical Research and Manufacturers of America (PhRMA)

Partnership for Prescription Assistance 950 F Street, NW, Suite 300 Washington, DC 20004 phone: (888) 477-2669 pparx.org

Brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Offers a single point of access to more than 475 public and private patient assistance programs, including nearly 200 programs offered by pharmaceutical companies.

Prescription Assistance

Prescription Assistance

RxAssist Volunteers in Health Care contact: info@rxassist.org rxassist.org

Search engine to locate Patient Assistance Programs that offer free medication to patients in financial need; downloadable information packet for patients describing options for prescription assistance.

RxHope

P.O. Box 42886 Cincinnati, OH 45242 phone: (877) 267-0517 fax: (732) 507-7600 contact: customerservice@rxhope.com rxhope.com

Helping hand to people in need of obtaining critical medications that they are unable to afford. Acts as advocate in making the patient assistance program journey easier and faster by supplying vital information and help.

ScriptSave

scriptsave.com

Prescription drug saving program; a discount card for numerous participating pharmacies providing savings through membership to individuals without consideration of income.

Aid and Assistance | 47


Travel and Lodging Assistance A listing of organizations that can provide asisstance with air transportation, ground transportation and lodging.

Air Transport Air Care Alliance

National Patient Air Transport Helpline 2060 State Highway 595 Lindrith, NM 87029 phone: (888) 260-9707 contact: mail@aircareall.org aircareall.org

Nationwide league of humanitarian flying organizations dedicated to community service. Links you to nationwide listings of organizations that provide transport for patients and sometimes family members needing to get to treatment.

Air Charity Network

4620 Haygood Road, Suite 1 Viriginia Beach, VA 23455 phone: (877) 621-7177 contact: execdir@aircharitynetwork.org aircharitynetwork.org/

Access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis.

Courage is very important. Like muscle, it is strengthened by use. -Ruth Gordon

48 | Aid and Assistance

Angel Flight West

3161 Donald Douglas Loop South Santa Monica, CA 90405 phone: (888) 426-2643 contact: info@angelflightwest.org angelflightwest.org

Flights serve a wide variety of needs. All are intended for situations in which the passenger cannot afford to purchase commercial airline tickets, or when travel by land or commercial airline would be a physical hardship. Other situations include, but are not limited to, a compromised immune system or living in a remote area without access to commercial transportation. There are different Angel Flight programs by region.

Angel Flight, Inc.

1515 East 71st Street, Suite 312 Tulsa, OK 74136 phone: (918) 749-8992 contact: angel@angelflight.com angelflight.com

Provides non-emergency transportation to medical treatment for patients who cannot afford it, or cannot fly on public transportation for health reasons, or public transportation is not readily available in your area.

Children’s Angel Flight 4620 Haygood Road, Suite 1 Virginia Beach, VA 23455 phone: (800) 296-1217 fax: (800) 550-1767 contact: info@childrensangelflight.org childrensangelflight.org

Managing and coordinating no-cost charitable child transport patient programs for children who need access to medical research centers and disease-specific treatment programs. Offers links to other cooperating health agencies.

Children’s Flight of Hope 205 New Edition Court Cary, NC 27511 phone: (919) 655-1628 fax: (919) 467-5299 contact: info@childrensflightofhope.org childrensflightofhope.org

Provides free, private air transport to and from medical facilities for critically ill or injured children (with their families or guardians) who, due to medical, financial, or logistical reasons, are unable to travel to their destinations by any other mode. Highly qualified volunteer pilots operate aircraft to transport children and their families to and from medical facilities throughout the eastern U.S.


Westchester County Airport 1 Loop Road White Plains, NY 10604 phone: (866) 328-1313 fax: (914) 328-3938 contact: info@corpangelnetwork.org corpangelnetwork.org

Finds available space on corporate jets for cancer patients in need of transportation for treatment, consultations, or checkups. The service is free for the patient and the one attendant or family member.

Lifeline Pilots

Byerly Terminal Greater Peoria Regional Airport 6100 W. Dirksen Parkway, Suite 302 Peoria, IL 61607 phone: (800) 822-7972 fax: (800) 822-7969 contact: mail@lifelinepilots.org lifelinepilots.org

Volunteer pilots who fly people in need of medical care, or other compelling need, to distant care centers or locations. There is no charge for pilot’s services. Requirements: Patients must be ambulatory; Patients must be unable to use other transportation; Patients must have verifiable financial need; Requests must be submitted by an agency, social worker, doctor, medical personnel, or other similarly qualified individual.

Mercy Medical Airlift

4620 Haygood Road, Suite 1 Virginia Beach, VA 23455 phone: (800) 296-1217 fax: (757) 318-9107 contact: info@mercymedicalairlift.org mercymedical.org

Provides access to distant specialized medical evaluation, diagnosis or treatment through long-distance medical air transportation.

Miracle Flights for Kids

2764 N. Green Valley Parkway #115 Green Valley, NV 89014-2120 phone: (800) 359-1711 contact: flightcoordinator@miracleflights.org miracleflights.org

Free air transportation for children and young adults to hospitals across America.

National Children’s Cancer Society

One South Memorial Drive, Suite 800 Saint Louis, MO 63102 phone: (314) 241-1600 nationalchildrenscancersociety.org

Helps children with cancer and their families by providing financial and fundraising assistance for costs related to medical treatment such as lodging and travel.

National Patient Air Transport HELPLINE

c/o National Patient Travel Center 4620 Haygood Rd, Suite 1 Virginia Beach, VA 23455 phone: (800) 296-1217 contact: info@nationalpatienttravelcenter.org patienttravel.org

A general listing of discounted and free air travel options. Referrals are made to all known appropriate charitable, charitably assisted, and special patient discount commercial services, based on an evaluation of the patient’s medical conditions, type of transport required, and departure/ destination locations.

Travel and Lodging Assistance

Corporate Angel Network Program

PALS: Patient Airlift Services palservices.org

Arranges free air transportation for individuals needing medical diagnosis or treatment in the Northeastern United States.

Volunteer Pilots Association

P.O. Box 471 Bridgeville, PA 15017 phone: (412) 221-1374 contact: info@volunteerpilots.org volunteerpilots.org

Provides air transportation to needy people who must travel to obtain medical treatment. Our member pilots, flying privately owned general aviation aircraft, donate their time and flight expenses. Because there is never a charge to those they fly, a verifiable financial need must exist. Able to transport patients who do not require medical attention during their flight, and who can enter and exit the aircraft with only limited assistance. Because of the smaller size of the aircraft, they have access to many small community airports not served by scheduled airlines. This often reduces the ground travel time for the patient.

Aid and Assistance | 49


Ground Transportation Note: Many organizations offer

free ground transportation in most cities for cancer patients through medical institutions, local transit authorities, social service agencies, religious organizations, and cancer organizations. The social worker at your treatment facility may be able to help you find phone numbers for any of these businesses or assist you with information. Ground transport services may be offered or mileage reimbursed through your state or local Department of Social Services. These national organizations may offer help.

American Cancer Society 250 Williams Street NW Atlanta, GA 30303 phone: (800) 227-2345 contact: nursejvd@aol.com cancer.org/treatment/ supportprogramservices/road-torecovery

Road to Recovery program offers transportation in many local areas.

The Angel Bus

phone: (800) 768-0238 angel-bus.org

Provides non-emergency, longdistance ground transportation to patients in need. May also offer gas cards.

Let us always meet each other with a smile, for the smile is the beginning of love. -Mother Teresa

Lodging Believe in Tomorrow 6601 Frederick Road Baltimore, MD 21228 phone: (800) 933-5470 believeintomorrow.org

Offers overnight accommodations, through their Children’s House program, to critically ill children and their families.

Hope Lodges

American Cancer Society 250 Williams Street NW Atlanta, GA 30303 phone: (800) 227-2345 cancer.org/docroot/subsite/ hopelodge/index.asp

Free, temporary housing facilities for cancer patients who are undergoing treatment and their families. Hope Lodges provide guests with private rooms, kitchen facilities, and, in some locations, transportation to treatments. Many lodges have room

50 | Aid and Assistance

for a family member to stay with the patient. Perhaps the most important thing that a Hope Lodge provides is a supportive and home-like atmosphere. Accommodations and eligibility requirements may vary by location.

Joe’s House

505 East 79th St. Suite 17E New York, NY 10075 phone: (877) 563-7468 contact: info@joeshouse.org joeshouse.org

Provides a nation-wide online service that helps cancer patients and their families find lodging near treatment centers, often for reduced rates.

National Association of Hospital Hospitality Houses

P.O. Box 1439 Gresham, OR 97030 phone: (800) 542-9730 fax: (828) 253-8082 contact: helpinghomes@nahhh.org nahhh.org

Information on lodging and support available for families receiving medical care away from home. Services vary from facility to facility and are offered at little or no cost to the guests.

National Children’s Cancer Society

One South Memorial Drive, Suite 800 Saint Louis, MO 63102 phone: (314) 241-1600 fax: (314) 241-1996 nationalchildrenscancersociety.org

Financial and fundraising assistance including costs related to medical treatment such as lodging and travel.

Ronald McDonald House Charities 1 Kroc Dr Oak Brook, IL 60523 phone: (630) 623-7048 fax: (630) 623-7488 rmhc.com

Provides referrals to local Ronald McDonald House locations. The houses provide lodging for families of seriously ill children being treated away from home. The lodging is usually close to a hospital.


The following organizations may offer financial assistance and scholarships. The Andre Sobel Essay Award

FinAid

finaid.org

8581 Santa Monica Blvd. #80 West Hollywood, CA 90069 phone: (310) 276-7111 contact: info@andreriveroflife.org andreriveroflife.org/award

FinAid was established in the fall of 1994 as a public service. This awardwinning site has grown into the most comprehensive annotated collection of information about student financial aid on the web. Access to FinAid is free for all users and there is no charge to link to the site.

Beyond the Cure Scholarship

Friends of Scott Foundation

A juried competition for young survivors of a life-threatening illness. First place winner receives $5,000.

One South Memorial Drive, Suite 800 St. Louis, MO 63102 phone: (800) 5-FAMILY contact: survivorship@thenccs.org beyondthecure.org/scholarships

Awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation. Multiple winners each year.

Cancer for College

981 Park Center Drive Vista, CA 92081 phone: (760) 599-5096 contact: info@cancerforcollege.org cancerforcollege.org

Cancer for College provides hope and inspiration to those who have battled cancer by awarding college scholarships to cancer survivors or amputees.

Cancer Survivor’s Fund P.O. Box 792 Missouri City, TX 77459 phone: (281) 437-7142 contact: csf@cancersurvivorsfund.org cancersurvivorsfund.org

Provides college scholarships and medical expense assistance for people diagnosed with cancer, receiving treatment for cancer, or in remission.

6977 Navajo Rd. #168 San Diego, CA 92119 phone: (619) 223-7268 fax: (619) 223-7002 friendsofscott.org/scholarship.aspx

Educational Financial Aid

Educational Financial Aid

Scholarship program is designed to provide funding to survivors who want to continue their education through technical school, vocational school, junior college, or a four-year college or university.

National Collegiate Cancer Foundation 4858 Battery Lane #216 Bethesda, MD 20814 phone: (240) 515-6262 collegiatecancer.org

Provides need-based financial support to young adult survivors pursuing higher education throughout their treatment and beyond.

Pediatric Brain Tumor Foundation of the United States

302 Ridgefield Ct. Asheville, NC 28806 phone: (800) 253-6530 contact: info@pbtfus.org pbtfus.org/survivors/education/ scholarships

Scholarship program for students who have survived a central nervous system tumor. May be used to cover tuition, fees, and books at any postsecondary institution, including technical schools, vocational schools, junior colleges, and four-year colleges or universities.

Aid and Assistance | 51


Ryan Mullaly Second Chance Fund

The Ulman Cancer Fund for Young Adults

Scholarship assistance to cancer survivors and those currently in treatment. Looking for young men and women whose high school years were disrupted by cancer and whose ability to qualify for most scholarships was precluded by the extensive absenteeism and physical disabilities which result from chemotherapy and radiation. Specifically for those diagnosed with lymphoma between 13 – 18 years of age.

Offers scholarships to support the financial needs of college students who are battling or have overcome cancer and who display financial need. Provides support programs, education, and resources free of charge to benefit young adults, their families, and friends who are affected by cancer.

26 Meadow Lane Pennington, NJ 08534 contact: The2dChanceFund@aol.com ryans2dchancefund.org

SAMFund for Young Adult Survivors of Cancer 89 South Street, Suite LL02 Boston, MA 02111 phone: (617) 938-3484 contact: info@thesamfund.org thesamfund.org

Provides various grants and scholarships to young adult survivors to help supplement the money that they and their families lose during treatment and pay for specific transitional issues, such as education, living, job search, and lingering medical expenses.

The Stephen T. Marchello Scholarship Foundation

1170 E. Long Place Centennial, CO 80122 phone: (303) 886-5018 contact: fmarchello@earthlink.net stmfoundation.org

Gives post-secondary scholarships to current year high school graduates who are cancer survivors and live in AZ, CA, CO, or MT.

No disease likes hope. -Hindu Proverb

SuperSibs! Scholarship Program

660 North First Bank Drive Palatine, IL 60067 phone: (867) 462-4742 contact: info@supersibs.org supersibs.org/what-wedo/scholarship

Offers scholarships to graduating high school seniors. To qualify, applicants must be a sibling of a child who has (or has had) cancer, live in the United States and must be attending an accredited educational institution.

52 | Aid and Assistance

6310 Stevens Forest Road, Suite 210 Columbia, MD 21230 phone: (888) 393-3863 contact: info@ulmanfund.org ulmanfund.org

United Negro College Fund 1805 7th St., NW Washington, DC 20001 phone: (800) 331-2244 uncf.org

Manages various scholarship programs. Awards 10,000 students of color each year. Not specific to cancer survivors.


Notes:

Aid and Assistance | 53


Child, Teen, and Family Resources Children and teens with cancer endure great challenges. So do their caregivers. This section lists resources that can help ease the burden; wish fulfillment organizations, lists of books, videos, free stuff, camps and vacation retreats, and peer-to-peer resources like online forums and pen pals for kids, parents, and siblings.

54 | Child, Teen, and Family Resources


National wish fulfillment organizations grant a wide variety of wishes that are requested by children and teens. Wishes are granted to children and teens with chronic, life-threatening, or terminal illnesses. Each organization has its own eligibility requirements and conditions for granting wishes.

General Wish Fulfillment Believe in Tomorrow

Children’s Wish Foundation International 8615 Roswell Road Atlanta, GA 30350-7526 phone: (800) 323-9474 childrenswish.org

6601 Frederick Road Baltimore, MD 21228 phone: (800) 933-5470 fax: (410) 744-1984 contact: info@believeintomorrow.org believeintomorrow.org

Grants wishes for terminally ill children under the age of 18, regardless of where the child lives or where he or she is undergoing treatment. Wish expenses are covered for the family including airline tickets, rental expenses, meals, spending money, and any salary potentially lost as a result of parents taking time off from their jobs to share their child’s wish.

Benefit4Kids

Clayton Dabney Foundation

Respite housing opportunities that help to relieve the stress endured by children being treated for a lifethreatening illness and their families. 21660 23 Mile Road Macomb, MI 48044 phone: (877) 245-5430 contact: info@b4k.org benefit4kids.org

Grants the outdoor wishes of children with life threatening illnesses.

Challenge Air Love Field Airport – North Concourse

7363 Cedar Springs Rd., LB24 Dallas, TX 75235 phone: (877) 359-5437 fax: (214) 351-3353 challengeair.com

Motivational, inspirational, and lifechanging experiences to physically challenged children and youth through aviation. They take children up in small planes and allow them to steer the plane for a few minutes. Available in several cities.

General Wish Fulfillment

Wish Fulfillment Organizations

6500 Greenville Ave., Suite 342 Dallas, TX 75206 phone: (214) 361-2600 contact: admin@claytondabney.org claytondabney.org

Provides families of children in the last stages of terminal cancer with assistance in creating ‘Everlasting Memories’. The assistance is arranged through the parents and is anonymous to the child.

The Dream Factory

120 W. Broadway, Suite 300 Louisville, KY 40202 phone: (800) 456-7556 contact: dfinfo@dreamfactoryinc.com dreamfactoryinc.com

Grants dreams to children diagnosed with critical or chronic illnesses who are 3 through 18 years of age.

Child, Teen, and Family Resources | 55


The Lighthouse Family Retreat

The Marty Lyons Foundation

Provides seaside retreats along the Florida panhandle for families living through childhood cancer. Designed to bring joy to children with cancer and their families, while renewing their strength, hope, and love.

Fulfills the special wishes of children ages 3 to 17 years old, who have been diagnosed as having a terminal or life threatening illness by providing and arranging special wish requests.

45 Technology Parkway South Marietta, GA 30061 phone: (678) 290-2955 contact: info@thelightousefamilyretreat.org lighthousefamilyretreat.org

Kids Wish Network

4060 Louis Ave. Holiday, FL 34691 phone: (888) 918-9004 contact: info@kidswishnetwork.org kidswishnetwork.org

Fulfills wishes of children with lifethreatening illnesses, sometimes even granting second wishes.

Little Star Foundation 256 Rancho Milagro Way Hesperus, CO 81326 phone: (800) 543-6565 contact: info@littlestar.org littlestar.org

Founded by tennis pro Andrea Jaeger, Little Star provides a summer camp and grants wishes to children receiving treatment for illnesses.

Make a Dream Come True National Children’s Leukemia Foundation 7316 Avenue U Brooklyn, NY 11234 phone: (718) 251-1222 contact: info@leukemiafoundation.org leukemiafoundation.org/dream

It’s not what happens to you, it’s what you do before it, during it, and after it. -Alan Weiss

Fulfills the dreams and wishes of young leukemia patients, both by answering their individual desires, and by arranging trips, outings, and private introductions with famous people.

Make-A-Wish Foundation of America 4742 N 74th Street, Suite 800 Phoenix, AZ 85016-4862 phone: (800) 722-9474 contact: mawfa@wish.org wish.org

Grants wishes to children who have life-threatening medical conditions. This organization operates internationally and will make referrals to local chapters.

56 | Child, Teen, and Family Resources

326 West 48th Street New York , NY 10036 phone: (212) 977-9474 contact: mac@martylyonsfoundation.org martylyonsfoundation.org

Special Wish Foundation 1250 Memory Lane N, Suite B Columbus, OH 43209 phone: (800) 486-9474 spwish.org

Grants wishes to children under age 21 who are diagnosed with lifethreatening or terminal illness.

Sunshine Foundation 1041 Mill Creek Drive

Feasterville, PA 19053 phone: (215) 396-4770 contact: philly@sunshinefoundation.org sunshinefoundation.org

Reaches out to children ages 3-21 suffering from terminal, as well as chronic, illnesses whose families are under financial strain due to the child’s illness.

United Special Sportsmen Alliance 7864 Shotwell Rd. Pittsville, WI 54466 phone: (800) 518-8019 childswish.com

Coordinates with other caring organizations worldwide in fulfilling a dream wish. They grant terminally ill and disabled sportsmen and women an outdoors adventure of their dreams.

Western Wishes Foundation

220 Adams Drive, Suite 280-303 Weatherford, TX 76086 phone: (817) 757-9216 westernwishes.org

Grants wishes to kids faced with adversity and who love the western way of life. Since 1994, this awardwinning program, has had the pleasure of turning dreams into lasting memories for these inspiring kids.


3000 West Esplanade Ave., Suite 100 Metairie, LA 70002 phone: (541) 841-0001 contact: wellfoundation@bellsouth.net wishingwellusa.org/home0.aspx

Provides children with lifethreatening illnesses their fondest wish in life.

Wish Fulfillment for Young Adults Wish fullfilment that grants the wishes of terminally ill young adults ages 18 and older. Dream Foundation

1528 Chapala Street, Suite 304 Santa Barbara, CA 93101 phone: (805) 564-2131 fax: (805) 564-7002 contact: info@dreamfoundation.org dreamfoundation.org

Wish Fulfillment for Young Adults

Wishing Well Foundation USA

Grants wishes to people ages 18 to 65 with a life expectancy of one year or less.

The Nicki Leach Foundation

130 Corridor Road #1657 Ponte Vedra Beach, FL 32004-1657 phone: (904) 686-1010 fax: (904) 686-1010 nickileach.org

Provides high school and college age students (ages 18 – 30) diagnosed with cancer, the opportunity to enjoy normal or extraordinary activities they might otherwise not be able to afford.

3 Little Birds 4 Life

P.O. Box 5703 3littlebirds4life.com/wishes

Grants wishes to cancer patients between ages 18 – 40.

Child, Teen, and Family Resources | 57


Camps and Vacation Retreats It is recommended that you speak specifically with your child’s medical team when considering a camp. Camps and retreats vary in the services they offer, activities, length of stay, medical assistance and location. Most camps are free-of-charge and some may provide additional travel cost assistance for out-of-town campers. This list focuses on national camps and vacation retreats. General Kids’ Camps American Cancer Society

1599 Clifton Road NE Atlanta, GA 30329-4251 phone: (800) 227-2345 cancer.org

Call the number above for camp descriptions and the dates and locations of the camps in your state.

American Childhood Cancer Organization

Strength and courage aren’t always measured in medals and victories. They are measured in the struggles that they overcome. The strongest people aren’t always the people who win, but the people who don’t give up when they lose. -Ashley Hodgeson

P.O. Box 498 Kensington, MD 20895-0498 phone: (800) 366-2223 contact: info@acco.org ped-onc.org/cfissues/camps.html

Provides comprehensive list of camps for children with cancer by state.

B.A.S.E. Camp

140 N Orlando Ave. Suite 120 Winter Park, FL 32789-3679 phone: (407) 673-5060 contact: E-MAIL@basecamp.org basecamp.org

Providing a year-round base of support for children and parents facing the challenge of living with cancer and other life-threatening hematology diseases. Serves brothers and sisters too.

Camp Good Days

Rochester Headquarters 1332 Pittsford-Mendon Road Mendon, NY 14506 phone: (800) 785-2135 contact: info@campgooddays.org campgooddays.org

Campers have a chance to experience all the traditional camping activities such as hiking, sailing, fishing

58 | Child, Teen, and Family Resources

and arts and crafts at our Keuka Lake facility. Camp also features a Project Adventure ropes course, a handicapped accessible swimming pool, miniature golf course, areas for music, nature and computers.

Camp Mak-A-Dream Children’s Oncology Camp Foundation

P.O. Box 1450 Missoula, MT 59806 phone: (406) 549-5987 contact: camp@montana.com campdream.org

Cost-free camp program for children and young adults with cancer. Offers kids the opportunity to participate in a variety of fun-filled camp activities, learn new skills, form positive peer relationships, and develop greater independence and self esteem. The camp is available on a priority basis to children and young adults with cancer, and their families. Located in Gold Creek Montana, this camp supports families throughout the U.S.

Camp Quality USA

1444 Mockingbird Circle Stow, OH 44224 phone: (330) 671-0167 contact: patty@campqualityusa.org campqualityusa.org

15 free summer camps camps located throughout the country for children diagnosed with cancer. Each camper is matched one-onone with their own volunteer adult Companion for the entire week. The Companion provides a helping hand and a listening ear for children who are dealing with the physical and emotional effects of cancer. All camp activities are designed to allow all campers to participate, regardless of stamina level or secondary physical handicap.


151 30th Street New York, NY 10001 phone: (877) 242-4543 contact: camp@chailifeline.org chailifeline.org/

Camp offered to children ages 6 and older with chronic illnesses. Preferences are given to children undergoing active or post treatment.

Camp Sunshine

35 Acadia Rd. Casco, ME 04015 phone: (207) 655-3800 contact: info@campsunshine.org campsunshine.org

Camp Sunshine provides respite, support, joy and hope to children with life-threatening illnesses and their immediate families. The yearround program is free of charge to all families, and includes 24-hour on-site medical and psychosocial support. Bereavement groups are also offered for families who have lost a child to an illness.

Children’s Oncology Camping Association International P.O. Box 7553 Atlanta, GA 30357 USA phone: (404) 661-5753 contact: west@cocai.org cocai.org

Provides normal life experiences for children, their siblings, and their families. Offers education, dissemination of information and sharing of ideas and concepts relevant to camping, childhood cancer and the impact that the diagnosis of childhood cancer has upon the family and the child. Website offers camp links.

Hole in the Wall Gang Camp

National Sports Center for the Disabled 1801 Bryant St, Suite 1500 Denver, CO 80204 phone: (303) 293-5711 contact: info@nscd.org nscd.org

Each year, thousands of children and adults with disabilities take to the ski slopes, mountain trails and golf links to learn more about sports and themselves. With specially trained staff and its own adaptive equipment lab, are taught a variety of summer and winter sports to individuals with almost any mental or physical disability.

One Step Camp

213 West Institute Place, Suite 511 Chicago, IL 60610 phone: (312) 924-4220 onestepcamp.org

Offers camp experiences and other educational and excursion programs throughout the year that allow children with cancer to just be kids. Support for siblings and parents as well.

Camps and Vacation Retreats

Camp Simcha

Professional Association of Therapeutic Horsemanship International P.O. Box 33150 Denver, CO 80233 phone: (800) 369-7433 contact: pathintl@pathintl.org pathintl.org

Promotes the benefit of horses for individuals with physical, emotional and learning disabilities. For individuals with disabilities, equine-assisted activities have been shown to improve muscle tone, balance, posture, coordination, motor development as well as emotional well-being.

565 Ashford Center Road Ashford, CT 06278 phone: (860) 429-3444 contact: ashford@ holeinthewallgang.org holeinthewallgang.org

In northeastern Connecticut, where children ages 7 – 15 with cancer or other serious blood diseases do not have to sit on the sidelines. Provides year-round activities for campers and other seriously ill children and their siblings. Camp-sponsored programs provide healthcare professionals and social workers with support and training. Retreats are organized for the children’s parents at resorts around the country offering respite, counseling, mutual support, and positive activities, free of charge. Child, Teen, and Family Resources | 59


Silver Lining Foundation 1490 Ute Avenue Aspen, CO 81611 phone: (970) 925-9540 contact: info@silverliningfoundation.org silverliningfoundation.org

Brings children together from all over the world for an all expense paid week of adventure in the therapeutically serene mountains of Aspen. Participants go white water rafting, horseback riding, on gondola rides up Aspen mountain, skiing and make lifetime friends.

Special Love (Camp Fantastic)

117 Youth Development Court Winchester, VA 22602, VA 22602 phone: (888) 930-2707 speciallove.org

Provides a network of support, including various camps for kids and families affected by cancer.

Family faces are magic mirrors looking at people who belong to us; we see the past, present and future. -Gail Lumet Buckley

60 | Child, Teen, and Family Resources


Connecting kids with cancer with other kids, parents and siblings of kids with cancer can be helpful and comforting. Online forums, pen-pal programs and groups are listed here.

Child/Teen Support and Community Forums 4YOUth

listserv.acor.org/archives/ 4youth.html

List for young people ages 12 – 21 who have or had cancer. Parents of children with cancer are not allowed in this group. The list is overseen by an adult survivor of cancer who has years of experience working with young survivors of cancer.

Ability OnLine

RPO P.O. Box 18515 Etobicoke, Ontario M9R 4C8 Canada phone: (866) 650-6207 contact: information@abilityonline.org ablelink.org/public/new

Free internet community where youth with disabilities or illness and their parents can meet others like them, make friends from all over the world, share their hopes and fears, find rolemodels and mentors, and feel like they belong.

Bandaids & Blackboards

lehman.cuny.edu/faculty/jfleitas/ bandaides/

Helps people understand what it’s like to grow up with medical issues, from the perspective of kids and teens. These kids have become experts at coping with problems that most people have never heard of. Contents are divided into three sections; kids, teens, and adults.

Bravekids.org

1592 Union Street San Francisco, CA 94123 phone: (415) 561-2393 contact: info@bravekids.org bravekids.org

Serves children and youth with disabilities and chronic/lifethreatening illnesses by providing a support community, information and resources and numerous medical conditions.

Cancer Kids cancerkids.org

Helps children with cancer tell their stories to the world! Offers resources, stories, discussion forums, and helpful tips. Offers links to wishing organizations, kid pages, an online bookstore, and memorials.

Community Forums and Friends

Community Forums and Friends

CanTeen

phone: (800) 357-0012 ext. 3286065 admin@canteen.org.au canteen.org.au

Australian site to support, develop and empower kids and teens living with cancer. Offers resources and promotes understanding internationally.

CaringBridge

1715 Yankee Doodle Road, Suite 301 Eagan, MN 55121 phone: (651) 452-7940 caringbridge.org

Free web pages to those receiving care (hosts more than 15,000 personalized CaringBridge pages) and a calendar service to help coordinate care. An online place where you can connect, share news, and receive support. CaringBridge brings together a global community of care powered by the love of family and friends in an easy, accessible and private way.

Child, Teen, and Family Resources | 61


Chemo Angels

P.O. Box 1971 Julian, CA 92036 contact: ChemoAngels@prodigy.net chemoangels.com

A volunteer organization dedicated to adding a ray of sunshine to the lives of those undergoing treatment for cancer. Patients receive a little pampering from the Angels as they go through a challenging experience. A personal ChemoAngel will do his/ her best to bring a ray of sunshine into their life. Services are provided through the postal mail and is international.

Famous Fone Friends

9101 Sawyer Street Los Angeles, CA 90035 phone: (310) 204-5683 contact: info@famousfonefriends.org fonefriends@aol.com

It always helps to have people we love beside us when we have to do difficult things in life. -Mister Rogers

P.O. Box 1491 Melville, NY 11747 phone: (631) 847-7735 contact: info@ honeysucklefoundation.org honeysucklefoundation.org

Emotional support for children diagnosed with cancer and their families through message boards, links to other resources, fundraising ideas, ways to increase community involvement and awareness.

Hugs and Hopes

P.O. Box 56 Harshaw, WI 54529 contact: sockinabox@aol.com hugsandhope.org

Provides encouragement and friendship to children who are hospitalized or homebound due to illness or injury. Actors, athletes, and musicians call children to help lift their spirits.

For sick kids battling critical illness. Every month they feature new stories and photos of sick children on the website. Visitors and volunteers pray for, encourage, and send children cheery postal mail (a.k.a.”happy mail”). They also provide goody bags, wish granting, balloon bouquets, and Christmas gifts.

Gilda’s Club® Worldwide

Imerman Angels

48 Wall Street, 11th Floor New York, NY 10005 phone: (888) 445-3248 contact: info@gildasclub.org

Provides meeting places where men, women and children living with cancer, along with their families and friends, can join with others to build a personal network of social and emotional support as an integral part of cancer treatment. Free of charge and nonprofit, Gilda’s Clubs offer support and networking groups, lectures and workshops, specialized children’s programs and social events, in a non-residential and home-like setting. eMail to find your local chapter.

Group Loop

919 18th Street, NW, Suite 54 Washington, DC 20006 phone: (202) 659-9709 contact: help@thewellnesscommunity.org grouploop.org

A safe place for teens touched by cancer to connect to find support, education and hope while dealing with a cancer diagnosis.

62 | Child, Teen, and Family Resources

Honeysuckle Foundation for Children with Cancer

400 W. Erie Street, Suite #405 Chicago, IL 60654 phone: (312) 274-5529 contact: info@imermanangels.org imermanangels.org

Provides one-on-one cancer support: connecting cancer fighters, survivors and caregivers.

Kidsaid

P.O. Box 3272 Ann Arbor, MI, 48106-3272 contact: webmaster@GriefNet.org kidsaid.com

Safe website for kids to help each other deal with grief about their losses. It’s a place to share and deal with feelings, to show artwork and stories, to talk about pets, and to meet with one’s peers. An Internet community consisting of more than 30 support groups and two websites. Offers links to griefnet, bookstores, library, memorials, newsletters, and resources.


Planet Cancer

Online Newsletter filled with ideas to provide “a dose of hopeTM” for kids and their families isolated by the rigors of childhood cancer treatment. Inspirational stories and poems written by children with cancer, along with resources and helpful tips from families who have been there.

Website contains information for teens and young adults with cancer including topics such as: comics, real world advice, books, music, videos, forum, news, opportunities, resources, links, gatherings, camps and support groups.

P.O. Box 4545 Santa Barbara, CA 93140 contact: info@kidscancernetwork.org kidscancernetwork.org

Look Good...Feel Better

phone: (800) 395-5665 lookgoodfeelbetter.org/programs/

Created to give teens access to the information they need to help them “deal” without subjecting them to public support groups that could potentially make them uncomfortable. While browsing the site, users have the option to privately explore different aspects of their disease on their own terms. The site presents information in four different areas: “About Face,” “Head Way,” “Health Esteem” and “Social Circles,” which covers everything from skincare and head wear to advice on nutrition and dealing with friends.

Lotsa Helping Hands

2 Clock Tower Place, Suite 610 Maynard, MA 01754 contact: information@lotsahelpinghands.com lotsahelpinghands.com

Create a free private, web-based community to organize family, friends, neighbors, and colleagues during times of need. Easily coordinate activities and manage volunteers with our intuitive group calendar. Communicate and share information using announcements, messages boards, and photos.

On Top of Cancer

2400 Chestnut St. Suite 2908 Philadelphia, PA 19103 contact: service@ontopofcancer.org ontopofcancer.org/kid_ teen_cancer.php

An online guide of websites and books for young people with cancer. Information, resources and support.

314 E. Highland Mall Blvd, Suite 306 Austin, Texas 78752 phone: (512) 452-9010 contact: info@planetcancer.org planetcancer.org

Send Kids the World

phone: (305) 904-2771 contact: info@sendkidstheworld.com sendkidstheworld.com

Website featuring kids with life threatening illnesses and injuries that enables people to reach out to them and send them encouraging postcards from all around the world.

Starbright World starbrightworld.org

Online social network for teens with chronic and life threatening medical conditions, and their siblings. Having a chronic illness or being a sick teen can be pretty tough on your social life, which is why the Starbright World community was established for teens to connect with other teens that are at home or in the hospital. Starbright World is a product of Starlight Children’s Foundation.

Community Forums and Friends

Kids Cancer Network

Teens Living with Cancer: Melissa’s Living Legacy Foundation 3111 Winton Road South Rochester, NY 14623 phone: (585) 334-0858 contact: info@teenslivingwithcancer.org teenslivingwithcancer.org/

Website with extensive information, discussion boards and forums for teens with cancer.

The Ulman Cancer Fund for Young Adults 921 E Fort Ave. Suite 325 Baltimore, MD 21230 phone: (888) 393-3863 contact: info@ulmanfund.org ulmanfund.org

Provides support programs, education, and resources, free of charge, to benefit young adults, their families and friends, who are affected by cancer, and to promote awareness and prevention of cancer. Network that links young adults and parents dealing with cancer for peer support and to simply share information. Child, Teen, and Family Resources | 63


Sibling Support and Community Forums Camp Comfort

Mt. Evans Hospice 3081 Bergen Peak Drive Evergreen, CO 80439 phone: (303) 674-6400 campcomfort.org

A weekend camp offered twice each summer that addresses the special needs of grieving children ages 6 to 12. Offers children a supportive environment in which they can gain an understanding of grief and loss. Children learn ways to cope with their grief through workshops and activities, building skills that may help them now and throughout their lives. Activities are balanced with swimming, boating and fishing.

Childhood Cancer Guides P.O. Box 361 McLean, VA 22101 childhoodcancerguides.org/ c-sibling.html

Information and research for parents regarding the emotional responses of the siblings. Also includes stories by siblings.

OncoNurse.com

Patient-Centered Guides 1005 Gravenstein Hwy. N Sebastopol, CA 95472 phone: (800) 998-9938 contact: health@oreilly.com onconurse.com/factsheets/ siblings_cc.html

A mix of medical, practical and emotional information, told by people who have been there.

Some people care too much. I think it’s called love. -A.A. Milne, Winnie-the-Pooh

Sibling Support Project 6512 23rd Ave NW, #213 Seattle, WA 98117 phone: (206) 297-6368 donmeyer@siblingsupport.org siblingsupport.org

Seeks to increase the peer support and information opportunities for siblings of people with special needs and to increase parents’ and providers’ understanding of sibling issues. Trains local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents’ and providers’ awareness of siblings’ unique, life-long, and ever changing 64 | Child, Teen, and Family Resources

concerns through workshops, websites, and written materials.

SuperSibs!

5005 Newport Drive, Suite 502 Rolling Meadows, IL 60008 phone: (866) 444-7427 contact: info@supersibs.org supersibs.org

Reaches out to siblings of over 10,000 children who are diagnosed with cancer each year. Siblings will feel valued, validated, heard, supported and delighted as recipients of SuperSibs! services and as participants in SuperSibs! activities. Offers sibling scholarship program, bereavement care and parent support.

Teens Living with Cancer: Melissa’s Living Legacy Foundation 3111 Winton Rd. S Rochester, NY 14623 phone: (585) 334-0858 contact: info@teenslivingwithcancer.org teenslivingwithcancer.org

Offers information written for teens regarding being a sibling of a cancer patient. Topics include; get information on your sibling’s disease, parent’s section, join a discussion board, and other articles written by siblings or teens with cancer.

Parent Support and Community Forums ListServes

Parents of children with cancer can find information and emotional support by participating in an online listserve. A listserve is simply a group of people who communicate by email. For instance, a member of the listserve (or “list” for short) posts an email to the list address, and then all the members of the list receive that email. Many disease specific list serves available on ACOR: acor.org

Bravekids.org

1592 Union Street San Francisco, CA 94123 phone: (415) 561-2393 contact: info@bravekids.org bravekids.org

Provides a support community, information and resources on numerous medical conditions. Includes an online parent forum.


health.groups.yahoo.com/group/ DayByDay

Yahoo group created to support the parents of children whose child died from cancer, and also to parents whose children have exhausted treatment options and are in hospice care.

Meet Up

meetup.com/

The world’s largest network of local groups. Search by City or Zip Code. Many support groups for parents.

My Lifeline

55 Madison St., Suite 750 Denver, CO 90206 MyLifeLine.org

MyLifeLine.org is a 501(c) nonprofit organization that encourages cancer patients and caregivers to create free, customized websites. Our mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing.

Community Forums and Friends

Day By Day

OncoChat

oncochat.org/

Real-time global support community for people whose lives have been touched by cancer.

Ped-Onc Resource Center

contact: porcwebmaster@pfeist.net ped-onc.org

Provides emotional support and psychological help for parents, kids, teens and young adults. Also provides links to educational, financal, employment and insurance resources.

Wellness Community 919 18th St. NW Suite 54 Washington DC 20006 phone: (202) 659-9709 contact: help@ thewellnesscommunity.org thewellnesscommunity.org

Online forums with many support and discussion groups.

Yahoo Groups groups.yahoo.com

Free online meeting place for people with shared interests. Has many cancer-related groups.

Child, Teen, and Family Resources | 65


Odds and Ends From hats to dolls to humor...helpful, unique and fun resources that didn’t fit neatly into any one category. Austin Hatcher Foundation for Pediatric Cancer

Gabe’s Chemo Duck Program

Provides services to children with cancer as well as their families through its cancer care center, Hatch’s House of Hope. Provides all services at no cost to families.

A unique educational program for children with cancer. Provides a soft, cuddly companion that provides huggable hope and alleviates fear and anxiety. Developed with child life specialists and medical professionals, helps introduce children and families to their new life and encourages healing through play therapy.

6739 Ringgold Rd., Suite G Chattanooga, TN 37412 phone: (423) 243-3475 contact: info@hatcherfoundation.org hatcherfoundation.org

BeauBeau: Beautiful Scarves for Beautiful Heads 4women.com

Fun, fashionable, and comfortable alternative to wearing a wig. Beautiful and unusual fabrics for women and children. Lots of styling options!

ChemoCare Head Wear

Happiness is a state of going somewhere wholeheartedly, without regret or reservation. -William H. Sheldon

phone: (586) 202-0328 contact: ccheadwear@yahoo.com chemocareheadwear.com

Hats, turbans, sleep caps, wigs, mouth care, undershirts and swim caps for those dealing with medical hair loss due to chemotherapy, radiation, alopecia or burns.

First Hand Foundation

applications.cerner.com/firsthand

Covers expenses for medical treatment, medical equipment, lodging, food, gas, parking and vehicle modifications for accessibility. Eligibility criteria and application information are available on the website.

Fuzzy Feet Foundation

P.O. Box 13443 Scottsdale, AZ 85267-5727 phone: (800) 543-9103 contact: FuzzyFeet555@aol.com fuzzyfeet.org

To bring comfort to as many hospitalized children between the ages of birth to 18 throughout the USA by providing slippers through the generosity of donors.

66 | Child, Teen, and Family Resources

chemoduck.org

Got Transition gottransition.org

A resource for young people who are leaving their pediatric care and moving toward the adult health system and doing things they have never done before. Dedicated to improving this process by supporting health providers, young adults, and their families with resources and information.

Hats, Scarves and More hatsscarvesandmore.com

Quality head coverings for women, men, teens and children with hair loss due to cancer, chemotherapy and other medical conditions.

Hats Off for Cancer

contact: hatdrivecoordinator@ hatssoffforcancer.org hatsoffforcancer.org

Provides hats to children with cancer.

Headcovers Unlimited headcovers.com

Wigs, hats, and cosmetics for cancer patients.

Headhuggers

1006 Auckland Way Chester, MD 21619 phone: (410) 643-5767 contact: Thompson@friend.ly.net headhuggers.org

Free patterns to knit or crochet chemo caps.


heavenlyhats.com

Collects and distributes brand new hats of all kinds to those heroes of all ages who lose their hair due to the treatment of cancer or the many other medical conditions which may cause hair loss. They get hats donated in large quantities, so your hospital, treatment center or doctor’s office can request a donation for you and all your clinic friends.

Hope Portal searchhope.org

A website developed to help find resources and information about childhood cancer, blood disorders, and other rare diseases or conditions.

I’m a Kid Foundation imakid.org

Supporting children with medically related hair loss due to cancer treatments, alopecia, or other ailments. Numerous programs and resources available.

Locks of Love

234 Southern Blvd. West Palm Beach, FL 33405 phone: (561) 833-7332 contact: info@locksoflove.org locksoflove.org

Provides hairpieces to financially disadvantaged children in the United States and Canada under age 18 suffering from long-term medical hair loss from any diagnosis.

Look Good...Feel Better

c/o CTFA Foundation 1101 17th Street NW, Suite 300 Washington, DC 20036 phone: (202) 331-1770 lookgoodfeelbetter.org/audience/ teens/program.htm

Peach’s Neet Feet P.O. Box 6477 Farmington, NM 87499 peachsneetfeet.com

Provides custom, hand-painted shoes to children living with disabilities and fighting serious illnesses. Available to children who can fit in size 5T shoes up to age 18. Primarily for pediatric cancer patients, but also available to children with lifelong major health issues that require multiple and lengthy hospital stays. Long term disability and genetic disorders also qualify. Children need to be in ACTIVE treatment to be eligible. Visit the website for more information and to email for your shoes!

Project Linus

P.O. Box 5621 Bloomington, IL 61702-5621 phone: (309) 454-1764 fax: (309) 454-1768 contact: prjctlinus@aol.com projectlinus.org

Donates handmade security blankets, quilts, and afghans to children undergoing difficult medical situations.

Shadow Buddies

phone: (888) BUDDIE1 contact: marty@shadowbuddies.com shadowbuddies.org

Soft doll friends for kids and resource packets for medical caretakers. 21 illnesses have their own symptom and treatment specific buddies – oncology being one of them.

Songs of Love Foundation P.O. Box 750809 Forest Hills, NY 11375 phone: (800) 960-7664 contact: info@songsoflove.org songsoflove.com

A free national public service program dedicated to teaching young and adult women cancer patients beauty techniques to help restore their appearance and self-image during chemotherapy and radiation treatment. LGFB offers group or individual sessions conducted by trained and certified cosmetologists, complimentary makeup kits for patients participating in a group program, and free materials such as video tapes and pamphlets.

Create personalized one-of-a-kind songs for children and teens facing medical, physical, or emotional challenges. Produce intimate musical portraits (which are never duplicated) for thousands of children and teens.

Monkey in My Chair

Dedicated to brightening the lives of seriously ill children (ages 4-18) through numerous resources and educational programs.

monkeyinmychair.org

A beneficial program to help cancer patients stay connected to their classmates. Each child receives a monkey with a backpack to take their place in the classroom as well as a teacher guide.

Odds and Ends

Heavenly Hats

Starlight Children’s Foundation

5900 Wilshire Blvd., Suite 2530 Los Angeles, CA 90036 phone: (310) 479-1212 contact: info@starlight.org starlight.org

Child, Teen, and Family Resources | 67


Studio International

TeamIMPACT

Salon based in San Francisco that specializes in working with those suffering from hair loss due to medical treatments. There’s also a full service online salon. Studio International offers a complete line of hair prosthesis, wigs and turbans which are also available online.

Harnesses the power of teamwork by matching courageous kids battling serious illness with college athletic teams. Team IMPACT children are drafted onto local college athletic teams and, to the greatest extent possible, become an official member of the team for the duration of their treatment and beyond. Visit the “Get Involved” section on the website to sign up.

Stupid Cancer

Wigs for Kids

2850 22nd St. San Francisco, CA 94110 phone: (415) 641-9447 studiohair.com

stupidcancer.org

Stupid Cancer is a nonprofit organization that empowers young adults (ages 15 – 39) affected by cancer through innovative and award-winning programs and services. As the nation’s premier patient advocate for this underserved population, their charter is to ensure that no one goes unaware of the ageappropriate support resources they are entitled to so they can get busy living. Numerous resources available.

Stylish Noggins stylishnoggins.com

Helps women suffering from hair loss find their own inner sense of style, through wiggs or scarves. Individual Skype consultations available.

Talia Seidman Foundation

The capacity to care is the thing which gives life its deepest significance. -Pablo Casals

phone: (215) 519-1993 contact: talzee@aol.com taliaseidman.com

The foundation focuses on bringing educational environments to the child; in the child’s hospital room or at home if homebound through the use of video conferencing technology. The children are able to interact with their peers, an interaction so necessary during this time in their lives. It creates meaningful and creative experiences that distract students from the anguish of treatment and provides stimulation to allow the brain to function at a higher level.

Taybear

contact: taybear@bigfoot.com taybearhugs.org

Organization which sends teddy bears out in bulk to hospitals. You can nominate your hospital to receive a box of Taylor’s teddy bears by emailing or having your hospital send a request on the website.

68 | Child, Teen, and Family Resources

goteamimpact.org

Executive Club Building 21330 Center Ridge Road, Suite 26 Rocky River, OH 44116 phone: (440) 333-4433 contact: info@wigsforkids.org wigsforkids.org

Provides information on hair loss and links to sites for wigs.


This section addresses the comprehensive needs of survivors and the long-term effects of cancer treatments. Many survivors and their families continue to confront complex and life-long issues. This section offers information and services to help cope with these issues. Also check the disabilities section for an expanded list that may be helpful. American Cancer Society phone: (800) 227-2345 cancer.org/docroot/home

A nationwide, community-based voluntary health organization. The website has cancer survivor information with information such as: special needs and interests, learn to develop healthy habits now that your treatment is over, connect with other survivors and find opportunities to volunteer and donate.

American Childhood Cancer Organization

P.O. Box 498 Kensington, MD 20895-0498 phone: (800) 366-2223 fax: (301) 962-3521 contact: staff@acco acco.org

Treatment and survivorship section helps families cope with the emotional stresses of their experiences.

American Institute for Cancer Research 1759 R Street, NW Washington, DC 20009 phone: (800) 843-8114 contact: aicrweb@aicr.org aicr.org

Provides information about cancer prevention, particularly through diet, physical activity, and weight management. Nutritional information available for cancer patients that are in treatment and those that have completed treatment. Offers a toll-free nutrition hotline, quarterly newsletter, public seminars, and funding of research grants. Has a wide array of consumer and health professional brochures. Produces CancerResource, a guide that consists of a package of publications that helps newly diagnosed cancer

Life After Cancer

Life After Cancer

patients and their families understand more about cancer, its treatment, dietary factors associated with cancer and its treatment, and other resources.

Beyond the Cure

One South Memorial Drive, Suite 800 St. Louis, MO 63102 phone: (800) 532-6459 contact: survivorship@childrencancer.org beyondthecure.org

Provides information pertaining to all areas of the survivor’s life. The Late-Effects Assessment tool allows you to build an assessment of late effects specific to your diagnosis and treatment.

Cancer Hope Network

2 North Road, Suite A Chester, NJ 07930 phone: (887) 467-3638 contact: info@cancerhopenetwork.org cancerhopenetwork.org

Free, confidential, one-on-one support to people with cancer and their families. Matches patients with trained volunteers who have themselves undergone a similar experience. Provides support and hope, to help patients and families look beyond the diagnosis, cope with treatment, and start living life to its fullest once again.

Child, Teen, and Family Resources | 69


The Cancer Project

5100 Wisconsin Ave., NW, Suite 400 Washington, DC 20016 phone: (202) 244-5038 contact: info@CancerProject.org cancerproject.org

Provides classes, books, video programs, fact sheets, brochures, and other educational materials on cancer prevention and survival. The organization also conducts research studies to investigate dietary issues and publicize the need for cancer prevention and the value of healthy diet changes. The Cancer Project’s free hands-on nutrition classes (Food for Life) help cancer survivors and their families learn new tastes and easy food preparation skills.

Cancer Survivor’s Toolkit

1010 Wayne Avenue, Suite 770 Silver Spring, MD 20910-9127 phone: (888) 622-7937 fax: (301) 565-9670 contact: info@canceradvocacy.org canceradvocacy.org/toolbox/

Free downloadable information developed by leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness. The program contains a set of basic skills to help navigate a diagnosis and special topics on key issues faced by people with cancer.

No one is useless in this world who lightens the burdens of another. -Charles Dickens

CancerSurvivors.org

contact: webmaster@cancersurvivors.org cancersurvivors.org

Cancer information, resources and support.

Cancer Survivors Network acscsn.org

Web-based service for cancer survivors, their families, caregivers, and friends. A non-commercial, private, secure way to find and communicate with others who share your interests and experiences. Membership is free, but in order to access all areas of CSN, registration with a valid e-mail address is required. Services provided include discussion boards and access to chat rooms; ability to create your own, “CSN My Space” where you can tell your story, blog, or recommend resources and get a free monthly newsletter.

70 | Child, Teen, and Family Resources

Childhood Cancer Guides P.O. Box 361 McLean, VA 22101 childhoodcancerguides.org/ resources.html

Creates, publishes, and updates books that help families of children with cancer and survivors of childhood cancer.

Cure Search National Childhood Cancer Foundation

4600 East West Highway, Suite 600 Bethesda, MD 20814-3457 phone: (800) 458-6223 contact: info@curesearch.org curesearch.org/for_parents_and_ families/

Focuses on wellness and ways to improve quality of life. Discover ways to maintain a healthy lifestyle, signs to look for, potential risks and ways to celebrate the life of a child with cancer.

Exceptional Cancer Patients

522 Jackson Park Drive Meadville, PA 16335 phone: (814) 337-8192 contact: info@mind-body.org ecap-online.org/

Provides resources, comprehensive professional training programs and interdisciplinary retreats that help people facing the challenges of cancer and other chronic illnesses discover their inner healing resources. Provides individuals and group counseling for patients, families, and cancer survivors.

The Group Room Vital Options International 4419 Coldwater Canyon Ave, Suite I Studio City, CA 91604-1479 phone: (818) 508-5657 contact: info@vitaloptions.org vitaloptions.org

A weekly syndicated call-in cancer talk show linking patients, survivors, and health care professionals.

International Cancer Alliance for Research and Education phone: (301) 656-3461 contact: contact@icare.org icare.org

Offers several unique patientcentered programs linked with top physicians and scientists from around the world. Offers cancer survival guide links, disease-specific information, latest treatments, and medical breakthroughs.


M.D. Anderson Cancer Center 1515 Holcombe Blvd Houston, TX 77030 phone: (800) 392-1611 mdanderson.org/departments/lacc

Medical clinic that specializes in survivors: those who have won their fight against cancer, but who may be facing health problems as a result of their cancer or cancer treatment.

LiveStrong Foundation 2201 E. Sixth St. Austin, TX 78702 phone: (866) 673-7205 fax: (512) 236-8482 contact: info@livestrong.org livestrong.org

Livestrong provides the practical information and tools people living with cancer need to live strong with four core program areas including education, advocacy, public health, and research.

Lucy’s Love Bus lucyslovebus.org/

Delivers comfort to children with cancer by paying for any therapy that helps to balance traditional cancer care and improves the quality of life for the child. Offer grants up to $1,000 for any child in the US between the ages of birth and 21 years old who is coping with a cancer diagnosis or late effects of cancer treatment.

National Cancer Survivors Day Foundation P.O. Box 682285 Franklin, TN 37068-2285 phone: (615) 794-3006 contact: info@ncsdf.org ncsdf.org

Organizes Survivors Day, an annual, nationwide celebration of life for cancer survivors and their loved ones, and health care professionals. It is celebrated on the first Sunday in June.

National Coalition for Cancer Survivorship

1010 Wayne Avenue, Suite 770 Silver Spring, MD 20910-9127 phone: (888) 650-9127 fax: (301) 565-9670 contact: info@canceradvocacy.org canceradvocacy.org

the “Cancer Survivors Almanac of Resources”, a comprehensive guide to finding resources for legal concerns (including employment and insurance), medical treatment, emotional support, self-help, and family issues. The Cancer Survivors Toolkit is also available through NCCS. This is a series of audio tapes to help people with cancer advocate for themselves and communicate their needs.

National Information Center for Children & Youth with Disabilities

Life After Cancer

Life After Cancer Care

P.O. Box 1492 Washington, DC 20013-1492 phone: (800) 695-0285 fax: (202) 884-8441 contact: nichy@aed.org nichcy.org

Information and referral to assist parents, educators, caregivers, advocates, and teachers in helping children and youth with disabilities participate as fully as possible at school, at home, and in their community. The center answers questions, matches families with common concerns, and maintains a database of information. Free pamphlets and information on disabilities and the rights of disabled children and their parents are available.

National Rehabilitation Information Center 8201 Corporate Drive, Suite 600 Landover, MD 20785 phone: (800) 346-2742 TTY: (301) 459-5984 contact: naricinfo@heitechservices.com naric.com

Information center focusing on disability and rehabilitation issues and research. Provides reference and referral services, as well as custom database searches of the REHABDATA bibliographic database. Provides information on prosthetics, equipment and supplies. NARIC also produces the REHABDATA database, a free newsletter on disability and rehabilitation research and resources and free resource guides.

Promotes a national awareness of issues affecting cancer survivors; serves as a clearinghouse for information on services and materials for survivors; advocates the rights and interests of cancer survivors; encourages the study of survivorship; promotes the development of cancer support activities. Developed Child, Teen, and Family Resources | 71


ONCO LINK oncolink.org

An electronic library of cancer information, established by University of Pennsylvania Medical Center. Includes explanations of cancer causes and treatments, clinical trial news, cancer related poetry and art.

Post-Treatment Resource Program

Memorial Sloan-Kettering Cancer Center 1275 York Avenue New York, NY 10021 phone: (800) 525-2225 contact: publicaffairs@mskcc.org mskcc.org/mskcc/html/11984.cfm

Resource center dealing with quality of life issues for former patients, and their family members, who have completed cancer treatments. Services include: an on-going community education program consisting of seminars, workshops and open-house meetings; individual, family and group counseling; insurance and employment information, advice and advocacy; a lending library; screening and referral for vocational counseling and training.

R.A. Bloch Cancer Foundation

4435 Main St. Kansas City, MO 64111 phone: (800) 433-0464 fax: (816) 854-8024 contact: hotline@hrblock.com blochcancer.org

Asking for help is a strength. -Alan Lohner

72 | Child, Teen, and Family Resources

Hotline that matches newly diagnosed cancer patients with someone who has survived the same kind of cancer. Offers free information, resources and support groups.

Wellness Community

919 18th Street NW, Suite 54 Washington, DC 20006 phone: (888) 793-9355 contact: help@thewellnesscommunity.org thewellnesscommunity.org

The Wellness Community is a nonprofit organization whose mission is to help people with cancer and their families enhance their health and well-being by providing a professional program of emotional support, education and hope. The Wellness Community provides a full range of support services to cancer patients and their families in a comfortable home-like setting, completely free of charge. Services include: drop-in and on-going support groups, networking groups for specific types of cancer, educational workshops, stress management sessions, lectures by experts in the field of oncology, and social gatherings - all with laughter, joy and hope. Call the national phone number for a local location.


Notes:

Child, Teen, and Family Resources | 73


Support for End of Life Nothing in life prepares us for a terminal prognosis. The very ground which we depend on for stability falls away and our life is spinning out of control. Grief is a long, painful, and arduous process. There is no right or wrong way to grieve, just your way. Your courage and perseverance has guided you this far and it will lead you through the unknown journey that is unfolding. This section offers resources of compassion, comfort, and support as well as information about in-home hospice care and memorializing the inspiring life of your child.

74 | Support for End of Life


Compassionate resources, comfort care, education, support, and guidance for end-of-life care. American Academy of Hospice and Palliative Medicine

Provides financial grants to states for direct medical and related services for children with disabilities, including chronic and terminal illnesses. Every state has its own plan. You can contact this organization for information on your child’s eligibility for services as well as information on state specific programs.

Physicians and other medical professionals dedicated to excellence in palliative medicine, the prevention and relief of suffering among patients and families by providing education and clinical practice standards, fostering research, facilitating personal and professional development of its members, and by public policy advocacy.

Caregiver Action Network

4700 W. Lake Ave. Glenview, IL 60025-1485 phone: (847) 375-4712 fax: (847) 375-6475 contact: info@aahpm.org aahpm.org

American Academy of Pain Management

975 Morning Star Drive, Suite A Sonora, CA 95370 phone: (209) 533-9744 Fax: (209) 533-9750 contact: aapm@aapainmanage.org aapainmanage.org

Provides credentialing to practitioners in the area of pain management. Offers information on managing pain in a home care environment and offers resources and links to other related information.

Americans for Better Care of the Dying 1700 Diagonal Road, Suite 635 Alexandria, VA 22314 phone: (703) 647-8505 contact: info@abcd-caring.org abcd-caring.org

Focuses efforts on fundamental reforms such as; improved pain management, better financial reimbursement systems, enhanced continuity of care, support for family caregivers, and changes in public policy.

Association of Maternal and Child Health Programs 2030 M Street, NW, Suite 350 Washington, DC 20036 phone: (202) 775-0436 contact: info@amchp.org amchp.org

10400 Connecticut Ave., #500 Kensington, MD 20895-3944 phone: (800) 896-3650 fax: (301) 942-2302 contact: info@thefamilycaregiver.org nfcacares.org

Education, support, respite care and advocacy for caregivers. Their toll free information line provides referrals to caregiver support groups and a resource guide. Distributes a newsletter with practical tips on caregiving.

Compassionate Care Resources

Compassionate Care Resources

Caregiver Survival Resources

3350 Griffin Road Ft. Lauderdale, FL 33312 phone: (800) 829-2734 fax: (954) 893-1779 contact: info@caregiver.com caregiver.com

A leading provider of information, support and guidence for family and professional caregivers.

Children’s Hospice International

1101 King Street, Suite 360 Alexandria, VA 22314 phone: (800) 242-4453 contact: info@chionline.org chionline.org

Provides support to children with life-threatening conditions and their families through referral and information services. Promotes hospice support through pediatric care facilities to encourage the inclusion of children in existing and developing hospice/homecare programs and to include the hospice perspectives in all areas of pediatric care.

Support for End of Life | 75


Clayton Dabney Foundation for Kids with Cancer

6500 Greenville Ave., Suite 342 Dallas, TX 75206 phone: (214) 361-2600 claytondabney.org

Grants wishes and financial assistance to terminally ill children and their needy families across the United States.

The Compassionate Friends P.O Box 3696 Oak Brook, IL 60522 phone: (630) 990-0010 fax: (630) 990-0246 compassionatefriends.org/ home.aspx

Provides comfort, hope, and support to families experiencing the death of a child, sibling, or grandchild and helps others better assist the grieving family. Offers brochures, conferences, sibling chats, cyber friends and pen pals to people suffering the loss of a child. There are 640 chapters across the United States.

CureSearch.org

A warm smile is the universal language of kindness. -William Arthur Ward

440 E. Huntington Drive, Suite 400 Arcadia, CA 91066 phone: (800) 458-6223, ext. 196 contact: info@curesearch.org curesearch.org/parentsfamilies

Website provides information and resources to help with end of life grief. Resources about end of life, recent death, and months or years after death.

Growth House

2215-R Market Street, #199 San Francisco, CA 94114 contact: info@thegrowthhouse.org growthhouse.org

Online community for end of life care. Offering resources to improve the quality of compassionate care for people who are dying. Links to home care, pain management, quality of life issues and grief.

Hospice Education Institute and HospiceLink 3 Unity Square Machiasport, ME 04655 phone: (800) 331-1620 fax: (207) 255-8008 contact: info@hospiceworld.org hospiceworld.org

Information about hospice and palliative care nationwide. Provides cancer patients and their families with referrals to local hospice programs and publications. 76 | Support for End of Life

Hospice Foundation of America

1621 Connecticut Ave., NW, Suite 300 Washington, DC 20009 phone: (800) 854-3402 contact: hfaoffice@hospicefoundation.org hospicefoundation.org

Information on hospice care, how to select a hospice team, locations of a hospice near you, philosophies, and care standards. Free publications are available.

Hospice Net

401 Bowling Avenue, Suite 51 Nashville, TN 37205 contact: info@hospicenet.org hospicenet.org

Information and links for families facing life-threatening illness. Sections for caregivers, pain management, bereavement, and helping kids understand and cope.

National Association for Home Care and Hospice 228 Seventh St. SE Washington, DC 20003 phone: (202) 547-7424 fax: (202) 547-3540 contact: hospice@nahc.com nahc.org

Information on home care and hospice. Offers referrals to local bereavement support groups in your area.

National Hospice & Palliative Care Organization

1731 King Street, Suite 100 Alexandria, VA 22314 phone: (800) 658-8898 contact: nhpco_info@nhpco.org nhpco.org

The largest nonprofit organization representing hospice and palliative care programs in the US. Designed to promote and maintain hospice care and to encourage support for patients and family members. Information about hospice concepts. Provides local referrals.

People Foundation 552A Valley Way Milpitas, CA 95035 phone: (408) 263-8000 abledata.com

Provides information on thousands of assistive devices for home health care, from eating utensils to wheelchairs. Provides prices, names, and addresses of suppliers.


The following organizations focus on coping with grief and loss. They can provide information, books and resources. Alive Alone

1112 Champaign Drive Van Wert, OH 45891 contact: alivealone@bright.net alivalon.org

Bi-monthly newsletter for parents who are now childless. Alive Alone is an organization for the education and charitable purposes to benefit bereaved parents, whose only child or all children are deceased, by providing a self-help network and publications to promote communication and healing, to assist in resolving grief, and a means to reinvest lives for a positive future.

American Hospice Foundation Grief Zone

2120 L Street, NW, Suite 200 Washington, DC 20037 phone: (800) 347-1413 fax: (202) 223-0208 contact: ahf@americanhospice.org americanhospice.org

Promotes hospice programs and services nationwide, focusing on schools, work environments, and healthcare systems.

Association for Death and Education and Counseling 111 Deer Lake Road, Suite 100 Deerfield, IL 60015 phone: (847) 509-0403 fax: (847) 480-9282 adec.org/coping-with-lossnew-/3469.htm

Multiple resources available on various end of life issues. Also offers a search engine to find a specialist.

Baby Steps

182-1054 Centre Street Thornhill, Ontario L4J-8E5 Canada phone: (905) 707-1030 contact: info@babysteps.com babysteps.com

Provides grief resources for families and kids. Offers bereavement sharing rooms, remembrance rooms for the bereaved and a bereavement resource center. Different areas for kids and adults.

Bereaved Parents of the USA P.O. Box 95 Park Forest, IL 60466 phone: (708) 748-7866 bereavedparentsusa.org

Educates families about the grief process as it applies to the death of a child at any age and from any cause; aids and supports those who are suffering such a loss; supplies telephone numbers of other bereaved parents, siblings and grandparents who are able to offer support to other more newly bereaved families; informs and educates members of the healthcare community who interact with bereaved parents.

Grief and Bereavement

Grief and Bereavement

Cancer Care, Inc.

275 7th Ave New York, NY 10001 phone: (800) 813-4673 contact: info@cancercare.org cancercare.org

Service programs include group, individual, family and bereavement counseling (in person, online and through telephone). Information and referral to local community resources. Supplementary financial assistance for home care, transportation and pain medication. Volunteer visitor program, community education for the public on-site, online and through teleconference programs.

Center for Grief Recovery 1263 W. Loyola Ave. Chicago, IL 60626 phone: (773) 274-4600 contact: information@griefcounselor.org griefcounselor.org

Full service counseling center helping people dealing with emotionally intense experiences such as grief, loss, trauma, depression or abuse. Diagnostic and therapeutic services are offered with treatment done individually as well as in group and family settings.

Support for End of Life | 77


Centering Corporation

7230 Maple Street Omaha, NE 68134 phone: (402) 553-1200 contact: centering@centering.org centering.org

Provides guidance for families experiencing grief. Request a copy of their catalog describing many books, pamphlets, and videos that focus on healing with grief.

Compassion Books, Inc. 7036 Hwy 80 South Burnsville, NC 28714 phone: (800) 970-4220 fax: (828) 675-9687 contact: orders@compassionbooks.com compassionbooks.com

The organization has carefully selected resources related to loss and grief for people of all ages. Over the past 20 years they have collected over 400 titles that have been reviewed by professionals. A knowledgeable staff is available to speak to you during office hours of 9am – 5pm EDT and books can be ordered by mail. Subscription to a newsletter is also available.

The Compassionate Friends

Trust in your own untried capacity. -Ella Wheeler Wilcox

P.O. Box 3696 Oak Brook, IL 60522-3696 phone: (877) 969-0010 fax: (630) 990-0246 contact: info@compassionatefriends.org compassionatefriends.org

Offers friendship and understanding to families who are grieving the death of a child of any age, from any cause. It is a national network of support groups that focus on assisting parents who have lost a child. Parents can also find advice and support for helping surviving children cope with the loss of a sibling. Offers publications for parents and siblings. There are no dues, and joining is only a matter of being there.

Dougy Center for Grieving Children P.O. Box 86852 Portland, OR 97286 phone: (503) 775-5683 fax: (503) 777-3097 contact: help@dougy.org dougy.org

A national model, this Oregon center offers children and teens a place to meet and be supported by peers and families who have experienced the death of a sister, parent or family member. Provides support and training locally, nationally and internationally to individuals and organizations seeking to assist children and teens in grief. Also offers information and resources on the website.

Elisabeth Kubler-Ross Foundation

P.O. Box 6168 Scottsdale, AZ 85261 contact: info@ekrfoundation.org ekrfoundation.org

Offers seminars, retreats, lectures, and an assortment of literature based on the work of Dr. Ross.

Emotions Anonymous

P.O. Box 4245 St. Paul, MN 55104-0245 phone: (651) 647-9712 contact: info2gh99jsd@emotions anonymous.org emotionsanonymous.org

Twelve-step organization composed of people who come together in weekly meetings for the purpose of working toward recovery from emotional difficulties. EA members are from many walks of life and are of diverse ages, economic status, social and educational backgrounds. The only requirement for membership is a desire to become well emotionally. Website also in Spanish, French, Japanese and Swedish.

Fernside Center for Grieving Children

4380 Malsbary Rd., Suite 300 Cincinnati, OH 45242 phone: (513) 745-0111 fernside.org

Addresses emotional needs of children and their families who have lost a primary family member or an important friend. They also provide outreach support, speakers on call and helpful booklets and brochures for helping children with grief.

78 | Support for End of Life


1 Boston Medical Center Place, Mat 5 Boston, MA 02118 phone: (617) 414-4005 bmc.org/pediatrics-goodgrief.htm

Provides guidance and assistance to parents and teachers on all aspects of childhood grief. Nationally recognized for its outstanding work in its field, and it often serves as a resource in crises situations. Staff members are caring and dedicated, and they have the most current data available on how to help grieving children. Provides, distributes, and maintains a resource library of films, books and other material, which may be borrowed by program participants.

Growth House

2215-R Market Street, #199 San Francisco, CA, 94114 contact: info@thegrowthhouse.org growthhouse.org

Online community for end of life care. Resources for life-threatening illness and end of life care with hopes to improve the quality of compassionate care for people who are dying. Links to home care, pain management, quality of life issues and grief.

Healing Hearts for Bereaved Parents

The Grief Store

P.O. Box 56 Black Diamond, WA 98010 contact: support@healingheart.net healingheart.net

Exstensive collection of books, videos, cards, and memorial items for children and adults.

Hospice Net

4227 S. Meridian, Suite C-363 Puyallup, WA 98373-5963 phone: (888) 564-6018 griefinc.com

Grief Net

P.O. Box 3272 Ann Arbor, MI, 48106-3272 griefnet.org

Internet community of persons dealing with grief, death, and major loss. They have over 50 email groups and two web sites. Their integrated approach to on-line grief support provides help to people working through loss and grief issues of many kinds. Their companion site, KIDSAID, provides a safe environment for kids and their parents to find information and ask questions.

Grief Recovery Method P.O. Box 6061-382 Sherman Oaks, CA 91413 phone: (818) 907-9600 contact: uscontact@grief.net griefrecoverymethod.com

Offers thousands of certified Grief Recovery specialists to help individuals through grief.

Grief Song Paul Alexander

Offers understanding, suggestions for coping, support, friendship, and hope for grieving families. Specific sections for siblings, parents, and grandparents.

Grief and Bereavement

Good Grief Program

401 Bowling Avenue, Suite 51 Nashville, TN 37205 contact: info@hospicenet.org hospicenet.org

Information and links for families facing life-threatening illness. Sections for caregivers, bereavement and helping kids understand and cope. Suggestions on talking to children about death.

KidSaid

P.O. Box 3272 Ann Arbor, MI, 48106-3272 contact: kidsaid@griefnet.org kidsaid.com

A safe website for kids to share and to help each other deal with grief about any of their losses. It’s a place to share and deal with feelings, to show artwork and stories, to talk about pets, to meet with one’s peers. This site is an internet community consisting of more than 30 email support groups and two web sites. Offers links to griefnet, bookstores, library, memorials, newsletters and resources.

P.O. Box 858 Amagansett, NY 11930 phone: (800) 538-4158 contact: griefsong@aol.com griefsong.com

Offers music and creative and nurturing ways to honor your grief following the death of a loved one. Website has a section to share titles and lyrics of songs that have touched you or strengthened you and even your original lyrics and poetry that speaks of the connections to your loved one.

Support for End of Life | 79


Living With Loss Magazine P.O. Box 101 Eckert, CO 81418 phone: (888) 604-4673 contact: grief@livingwithloss.com livingwithloss.com

A support group in print and complete grief resource center. The stories, articles and poems in the magazine come from the bereaved themselves. Regular departments in the magazine written by professionals who are in the field of grief intervention. Their articles address physical and mental health issues, the psychology of mourning, ecumenical faith and cross-cultural perspectives, the grief of children, and even humor.

Mental Health Network mentalhelp.net

Extensive guide to mental health, psychology, and psychiatry online resources, currently listing over 7,000 individual resources for depression, suicide, eating and sleeping problems, anxiety, and more.

M.I.S.S. Foundation

P.O. Box 5333 Peoria, AZ 85385 phone: (888) 455-6477 contact: info@missfoundation.org missfoundation.org

In the absence of love, love. -Alan Lohner

Provides emergency support to families in crisis after the death of their baby or child from any cause. They help families cope with the resultant feelings of overwhelming grief and loss.

National Self-Help Clearinghouse

1211 Chestnut Street, Suite 1207 Philadelphia, PA 19107 phone: (800) 553-4539 fax: (215) 636-6312 contact: info@mhselfhelp.org mhselfhelp.org

Helps people locate self-help groups in their region. Offers educational materials and newsletters. Online resources and information are also available through their website.

Shiva Foundation

phone: (805) 541-3364 contact: shiva@goodgrief.org goodgrief.org

Formed to open the dialogue around issues of grief and loss in such a way that honors loss in the cycle of life.

80 | Support for End of Life


Funerals and memorial services are complex events that must balance many factors, including religious requirements, emotional needs, and financial resources. Most states have a licensing board that regulates the funeral industry. If you want additional information about how to make funeral arrangements and available options, you may want to talk with your hospital social worker or chaplain. ACOR

acor.org/ped-onc

The “Time to Go” link on this web page contains information and links for planning a child’s funeral. Information is from parents who have been through the experience and want to give parents suggestions on how to deal with some practical matters, freeing them to enjoy fully their last days on earth with their child.

A Guide to Arranging a Funeral

health.state.ny.us/nysdoh/ consumer/patient/funeral.htm

Provides information on funeral and memorial planning, terms and vocabulary used by funeral homes, commonly asked questions regarding arrangements, and important guidelines to help make decisions and prevent overcharging.

Cremation Association of North America

499 Northgate Parkway Wheeling, IL 60090 phone: (312) 245-1077 fax: (312) 321-4098 contact: cana@smithbucklin.com cremationassociation.org

An association of crematories, cemeteries, and funeral homes that offer cremation and encourage the concept of memorialization.

Funeral Consumers’ Alliance

33 Patchen Road South Burlington, VT 05403 phone: (800) 765-0107 fax: (802) 482-5246 contact: fca@funerals.org funerals.org

Advises families of their rights, educates them regarding choices, helps with lower priced options, and advises on rights to care for one’s own death.

Funeral and Memorial Services

Funeral and Memorial Services

FuneralNet

1219 SE Ivon Street, Suite 200 Portland, OR 97202 phone: (800) 721-8166 fax: (503) 736-9835 contact: info@funeralnet.com funeralnet.com

Offers Americans the most extensive funeral home directory on the Internet. The directory can lead you to funeral home websites in your area. Also offers helpful information regarding funerals, cremations, cemeteries and other related subjects.

Funeralplan.com funeralplan.com

Information about funeral planning and the funeral industry. The funeral home locator, a key element of funeralplan.com, is designed to help consumers locate family-owned funeral homes in their area.

Eternal Reefs

P.O. BOX 2473 Decatur, GA 30031 phone: (888) 423-7333 contact: info@eternalreefs.com eternalreefs.com

Offers families a way to memoralize a family member by turning cremated remains into an artificial coral reef that can be placed into the ocean.

Support for End of Life | 81


LifeGem

836 Arlington Heights Road #311 Elk Grove Village, IL 60007 phone: (866) 543-3436 contact: info@lifegem.com lifegem.com

A LifeGem is a certified, high quality diamond created from the ashes or hair of your loved one as a memorial to their unique and wonderful life.

National Funeral Directors’ Association 13625 Bishops Drive Brookfield, WI 53005 phone: (800) 228-6332 fax: (262) 789-6977 contact: nfda@nfda.org nfda.org/public.html

Offers information on funerals and memorial planning. Provides numerous links to resources associated with death.

M.I.S.S. Foundation

phone: (888) 455-6477 contact: info@missfoundation.org misschildren.org/family/ funeral.html

Provides information and options for funeral and memorial services, including a Funeral/Memorial Planning Worksheet.

Memorials Online

P.O. Box 28101 St. John’s, NL Canada A1B 4J8 contact: webmaster@ memorialsonline.com memorialsonline.com

Love is never lost. -Alan Lohner

82 | Support for End of Life

Internet memorial obituary archive resource. Also provides access to a broad range of funeral, bereavement and sympathy related services. The organization helps families create meaningful website Memorial Tributes in an open, accessible environment for friends and family around the world to celebrate the lives of loved ones.


Notes:

81


Index 3 Little Birds 4 Life................................................................ 57 4YOUth................................................................................... 61 A Guide to Arranging a Funeral........................................... 81 Ability OnLine....................................................................... 61 Abledata........................................................................... 23, 29 AboutFace......................................................................... 11,23 Accreditation Council on Services for People with Disabilities..................................................... 23 ACOR...................................................................................... 81 Aimee’s Army.......................................................................... 6 Air Care Alliance...................................................................48 Air Charity Network.............................................................. 48 Alive Alone............................................................................. 77 Alternative Health Consultant............................................. 33 AMA Doctor Finder............................................................... 31 American Academy of Audiology........................................ 23 American Academy of Dermatology................................... 12 American Academy of Hospice and Palliative Medicine..................................................... 75 American Academy of Pain Management.................... 21, 75 American Amputee Foundation..........................................23 American Brain Tumor Association....................................... 6 American Cancer Association.............................................. 15 American Cancer Society................................2, 38, 50, 58, 69 American Childhood Cancer Organization................... 58, 69 American Childhood Cancer Foundation........................... 15 American Council of the Blind............................................. 23 American Council on Education.......................................... 23 American Counseling Association...................................... 15 American Disability Association.......................................... 24 American Family Therapy Academy................................... 15 American Head and Neck Society....................................... 12 American Health Insurance Plans....................................... 45 American Holistic Medical Association.............................. 33 American Hospice Foundation Grief Zone......................... 77 American Institute for Cancer Research....................... 33, 69 American Kidney Fund................................................... 27, 38 American Liver Foundation............................................. 10,27 American Lung Association................................................. 10 American Massage Therapy Association............................ 33 American Organ Transplant Association............................ 27 American Pain Society.......................................................... 21 American Pediatric Surgical Association............................ 31 American Society for Deaf Children.................................... 24 American Society for Pain Management Nursing.............. 21 American Society of Pediatric Hematology/Oncology...................................................... 13 Americans for Better Care of the Dying.............................. 75 Americans with Disabilities Act.......................................... 23 Amputee Coalition of America.............................................24 Andre Sobel Essay Award, The............................................ 51 Andrew McDonough B+ Foundation, The.......................... 38 Angel Bus, The....................................................................... 50 Angel Flight, Inc.................................................................... 48 84 | Index

Angel Flight West.................................................................. 48 Annie Appleseed Project...................................................... 33 Aplastic Anemia and MDS International Foundation........ 13 Arbor Nutrition Guide........................................................... 33 ARCH: National Respite Network........................................ 24 ASK Childhood Cancer Foundation..................................... 38 Association for Death and Education and Counseling.................................................................. 77 Association of Cancer Online Resources............................ 15 Association of Jewish Family and Children’s Agencies, Intercultural Resources................. 38 Association of Junior Leagues .International, Inc., The....................................................... 38 Association of Maternal and Child Health Programs.......................................................... 39, 75 Association of Oncology Social Work Journal of Psychosocial Oncology.................................... 15 Association of Pediatric Hematology/ Oncology Nurses...............................................................16 Association of Pediatric Oncology Social Workers.................................................................... 16 Austin Hatcher Foundation for Pediatric Cancer............... 66 B.A.S.E. Camp........................................................................ 58 Baby Steps............................................................................. 77 Bandaids & Blackboards................................................. 16, 61 Be The Match......................................................................... 27 Bear Necessities Pediatric Cancer Foundation.................. 16 BeauBeau: Beautiful Scarves for Beautiful Heads.............. 66 Beginnings for Parents of Hearing Impaired Children, Inc....................................................... 24 Believe in Tomorrow....................................................... 50, 55 Benefit4Kids........................................................................... 55 Bereaved Parents of the USA............................................... 77 Best Doctors........................................................................... 31 Beyond the Cure Scholarship............................................... 51 Beyond the Cure.................................................................... 69 Blood & Marrow Transplant Information Network......................................................... 27 Bone Marrow Foundation..................................................... 39 Brain Trust................................................................................ 6 Brain Tumor Foundation for Children, Inc............................ .6 Brain Tumor Foundation of Canada....................................... 6 Bravekids.org............................................................. 16, 61, 64 Breastcancer.org...................................................................... 8 Caitlin Raymond International Registry.............................. 27 Camp Comfort....................................................................... 64 Camp Good Days................................................................... 58 Camp Mak-A-Dream Children’s Oncology Camp Foundation.............................................................. 58 Camp Quality USA................................................................ 58 Camp Simcha......................................................................... 59 Camp Sunshine.....................................................................59 Cancer 411............................................................................. 31 Cancer and Careers............................................................... 44


Cancer Care, Inc...................................................16, 29, 39, 77 Cancer Care........................................................................... 34 Cancer Cure Foundation, The.............................................. 34 Cancer for College................................................................. 51 Cancer Fund of America....................................................... 39 Cancer Hope Network.................................................... 16, 69 Cancer Information and Counseling Line........................... 16 Cancer Information Service National Cancer Institute...... 21 Cancer Kids............................................................................ 61 Cancer Nutrition Center....................................................... 34 Cancer Pain Management in Children................................ 21 Cancer Pain............................................................................ 21 Cancer Project, The............................................................... 70 Cancer Research Institute.................................................... 34 Cancer Survivor’s Fund................................................... 39, 51 Cancer Survivor’s Network................................................... 70 Cancer Survivor’s Toolkit...................................................... 70 Cancernet..................................................................... 2, 16, 21 CancerSurvivors.org.............................................................. 70 CanHelp.................................................................................. 33 CanTeen.................................................................................61 Carcinoid Cancer Foundation................................................ 8 Caregiver Action Network.............................................. 29, 75 Caregiver Survival Resources......................................... 29, 75 CaringBridge.................................................................... 17, 61 Castle Connolly...................................................................... 31 Catholic Charities, U.S.A....................................................... 39 Center for Family Caregivers................................................ 29 Center for Grief Recovery..................................................... 77 Centering Corportation......................................................... 78 Centers for Medicare & Medicaid Services.................. 39, 45 Chai Lifeline..................................................................... 17, 39 Challenge Air Love Field AirportNorth Concourse................................................................ 55 Chemo Angels....................................................................... 62 ChemoCare Head Wear......................................................... 66 Childhood Brain Tumor Foundation...................................... 6 Childhood Cancer Guides........................................ 17, 64, 70 Childhood Leukemia Foundation........................................17 Children’s Brain Tumor Foundation....................................... 7 Children’s Angel Flight......................................................... 48 Children’s Flight of Hope...................................................... 48 Children’s Health Insurance Program: Family Voices........ 45 Children’s Hospice International......................................... 75 Children’s Leukemia Research Association.......................... 9 Children’s Liver Association for Support Services................................................... 10 , 27, 39 Children’s Neuroblastoma Cancer Foundation.................. 10 Children’s Oncology Camping Association International.................................................. 59 Children’s Organ Transplant Association..................... 27, 43 Children’s Tumor Foundation............................................... 11 Children’s Wish Foundation International.......................... 55 Civitan International............................................................. 39 Clayton Dabney Foundation........................................... 55, 76 Compassion Books, Inc......................................................... 78 Compassionate Friends, The.......................................... 76, 78

Complementary/Integrative Medicine Education Resources......................................................... 34 Cord Blood Registry.............................................................. 28 Corporate Angel Network Program..................................... 49 Council for Health and Human Services Ministries........... 39 Cremation Association of North America........................... 81 Cure Our Children Foundation, The....................................... 6 Cure Research Foundation................................................... 31 CureSearch............................................................21, 29, 70, 76 Dana-Farber Cancer Institute................................................ 7 Day By Day............................................................................. 65 Department of Health and Human Services for the Office of the Inspector General......................................... 45 Disability Expert.................................................................... 40 Disability Rights Education & Defense Fund..................... 24 Disabled Children’s Relief Fund..................................... 24, 40 Disabled Sports USA............................................................. 24 Diversity Rx............................................................................ 35 DocFinder............................................................................... 31 Dougy Center for Grieving Children.................................... 78 Dream Factory, The...............................................................55 Dream Foundation................................................................. 57 E.F. Moody............................................................................. 29 Elisabeth Kubler-Ross Foundation....................................... 78 Elks USA................................................................................. 40 Endocrine Society................................................................... 8 Eternal Reefs.......................................................................... 81 Exceptional Cancer Patients.......................................... 17, 70 ExploreBMT.org..................................................................... 28 Eye Cancer Network............................................................. 11 Family Voices......................................................................... 17 Famous Fone Friends............................................................ 62 Fanconi Anemia Research Fund.......................................... 13 Fanconi Canada..................................................................... 13 Federation for Children with Special Needs.................. 17,24 Fernside Center for Grieving Children................................ 78 Financial Aid.......................................................................... 51 First Hand Foundation.............................................. 40, 45, 66 Florida Brain Tumor Association............................................ 7 Food and Drug Administration............................................. 17 Fred Hutchinson Cancer Research Center......................... 28 Friends of Scott Foundation................................................. 51 Funeral Consumers’ Alliance............................................... 81 FuneralNet............................................................................. 81 Funeralplan.com.................................................................... 81 Fuzzy Feet Foundation......................................................... 66 Gabe’s Chemo Duck Program.............................................. 66 General Grand Chapter, Order of the Eastern Star.................................................................40 Genetic Alliance.................................................................... 25 Gesundheit Institute............................................................. 17 Get Palliative Care.org.......................................................... 21 Gilda’s Club Worldwide........................................................ 62 Gold Ribbons for Childhood Cancer.................................... 17 Good Grief Program.............................................................. 79 Got Transition........................................................................ 66 Grief Net................................................................................. 79 Index | 85


Grief Recovery Method......................................................... 79 Grief Song Paul Alexander.................................................... 79 Grief Store, The...................................................................... 79 Group Loop............................................................................ 62 Group Room Vital Options International, The..................... 70 Growth House.................................................................. 76, 79 Hats Off for Cancer................................................................ 66 Hats, Scarves and More........................................................ 66 Head and Neck Cancer Alliance.......................................... 12 Headcovers Unlimited.......................................................... 66 Headhuggers......................................................................... 66 Healing Hearts for Bereaved Parents.................................. 79 Health Insurance Association of America........................... 45 Healthfinder........................................................................... 18 Healthgrades.com................................................................. 31 HEATH Resource Center...................................................... 25 Heavenly Hats....................................................................... 67 Help Hope Live...................................................................... 28 Hirshberg Foundation for Pancreatic Cancer Research.................................................................. 8 Histiocytosis Association of America.................................. 13 Hole in the Wall Gang Camp................................................ 59 Honeysuckle Foundation for Children with Cancer.................................................................. 18, 62 Hope Lodges.......................................................................... 50 Hope Portal............................................................................ 67 Hospice Education Institute and HospiceLink................... 76 Hospice Foundation of America........................................... 76 Hospice Net..................................................................... 76, 79 Hugs and Hopes.................................................................... 62 iCan, Inc.................................................................................. 25 I’m a Kid Foundation............................................................. 67 Imerman Angels.............................................................. 18, 62 Income Tax Deductions........................................................ 40 Insure Kids Now.................................................................... 45 InteliHealth.............................................................................. 2 Intercultural Cancer Council................................................ 35 International Cancer Alliance for Research and Education................................................... 70 International Myeloma Foundation....................................... 9 Jacob’s Heart Children’s Cancer Association..................... 35 Job Accommodation Network............................................. 44 Joe’s House............................................................................ 50 Joint Commission on Accreditation of Healthcare Organizations................................................. 31 Kelly Anne Dolan Memorial Fund........................................ 40 Kids Cancer Network............................................................ 63 Kids Together, Inc.................................................................. 25 Kids Wish Network................................................................ 56 Kidsaid.............................................................................. 62, 79 KidsHealth.org.............................................................. 2,18, 35 KidWX.................................................................................... 31 Kiwanis International............................................................ 40 Knights of Columbus............................................................. 40 Lab Tests Online.................................................................... 31 Langerhans Cell Histiocytosis.............................................. 14 Lash and Associated Publishing/Training............................ 7 Leukemia & Lymphoma Society, The......................... 9, 41 47 86 | Index

Leukemia Research Foundation............................................ 9 Life After Cancer Care........................................................... 71 LifeGem.................................................................................. 82 Lifeline Pilots.......................................................................... 49 Lighthouse Family Retreat, The........................................... 56 Lighthouse for the Blind....................................................... 25 Linus Pauling Institute of Science and Medicine............... 34 Lions Club International....................................................... 41 ListServes............................................................................... 64 Little Star Foundation........................................................... 56 LiveStrong Foundation................................................... 18, 71 Living With Loss Magazine.................................................. 80 Locks of Love......................................................................... 67 Look Good...Feel Better.................................................. 63, 67 Lotsa Helping Hands............................................................ 63 Lucy’s Love Bus............................................................... 41, 71 Lung Cancer 101................................................................... 10 Lustgarten Foundation for Pancreatic Cancer Research.................................................................. 8 Lymphoma Research Foundation.......................................... 9 M.I.S.S. Foundation......................................................... 80, 82 Madison’s Foundation.......................................................... 14 Make a Dream Come True National Children’s Leukemia Foundation..................................... 56 Make-A-Wish Foundation of America................................. 56 Marty Lyons Foundation, The............................................... 56 Max Foundation.................................................................... 35 Med Help International......................................................... 18 Medical Information Bureau Inc..........................................45 MedlinePlus.gov...................................................................... 2 Medterms............................................................................... 31 Meet Up.................................................................................. 65 Memorials Online.................................................................. 82 Meningioma Mommas............................................................ 7 Mental Health Network........................................................ 80 Mercy Medical Airlift............................................................ 49 Mesothelioma Web................................................................ 14 Miracle Ear Children’s Foundation...................................... 25 Miracle Flights for Kids......................................................... 49 Monkey in My Chair.............................................................. 67 Multiple Myeloma Research Foundation............................ 10 Musella Foundation................................................................. 7 My Lifeline............................................................................. 65 National Alliance for Caregiving.......................................... 29 National Alliance for Hispanic Health................................. 35 National Association for Home Care and Hospice........................................................ 29, 76 National Association of Hospital Hospitality Houses............................................................. 50 National Association of Insurance Commissioners...........46 National Bone Marrow Transplant Link.............................. 28 National Brain Tumor Foundation.......................................... 7 National Cancer Institute........................................... 2, 14, 35 National Cancer Survivors Day Foundation........................ 71 National Center for Complementary and Alternative Medicine......................................................... 34 National Children’s Cancer Society..............18, 41, 43, 49, 50 National Children’s Leukemia Foundation......................... 10


National Coalition for Cancer Survivorship......................... 71 National Collegiate Cancer Foundation.............................. 51 National Dissemination Center for Children with Disabilities.................................................. 25 National Federation of the Blind.......................................... 25 National Foundation for Transplants................................... 28 National Funeral Directors’ Association............................. 82 National Hemophilia Foundation......................................... 41 National Hospice and Palliative Care Organization.............................................................. 76 National Information Center for Children & Youth with Disabilities...................................................... 71 National Information Center for Psych Central.................. 26 National Institute of Neurological Disorders and Stroke........................................................... 7 National Lekotek Center....................................................... 25 National Library of Medicine Guide to Funding Health Information............................................... 2 National Library Service for the Blind and Physically Handicapped.................................................... 26 National Lymphedema Network.......................................... 14 National Mental Health Association.................................... 18 National Organization for Rare Disorders.................. 3,14, 47 National Parent to Parent Support and Information System........................................................... 18 National Patient Advocate Foundation............................... 46 National Patient Air Transport Helpline.............................. 49 National Rehabilitation Information Center.................. 26, 71 National Retinoblastoma Research Support Foundation........................................................... 11 National Self-Help Clearinghouse........................................ 80 National Sports Center for the Disabled.............................. 59 National Transplant Assistance Fund.................................. 43 National Wilms’ Tumor Study Group................................... 13 National Lymphedema Network............................................ 8 Native American Cancer Research...................................... 35 NeedyMeds, Inc..................................................................... 47 Neuroblastoma Society......................................................... 11 Neuroblastoma: Children’s Cancer Society........................ 11 Neutropenia Support Association Inc.................................. 14 Nicki Leach Foundation, The............................................... 57 NIH Pain Consortium............................................................ 22 Northwest Sarcoma Foundation.......................................... 12 Oasis of Hope......................................................................... 34 Office of Minority Health...................................................... 35 Oley Foundation.................................................................... 30 On Top of Cancer............................................................. 19, 63 ONCO LINK........................................................................... 72 OncoChat............................................................................... 65 Oncolink: University of Pennsylvania.................................... 3 OncoNurse.com..................................................................... 64 One Step Camp...................................................................... 59 Ovarian Cancer: Medlineplus.gov.......................................... 9 Ovarian Germ Cell Cancers: National Cancer Institute.................................................. 13 Pacer Center.......................................................................... 19 Pain Management: OncoLink............................................... 22 PALS: Patient Airlift Services................................................ 49

Pancreatic Cancer Action Network....................................... 9 Pancreatica.............................................................................. 9 Parents Against Cancer........................................................ 19 Parents Helping Parents....................................................... 19 Patient Advocate Foundation............................................... 41 Pediatric Brain Tumor Foundation of the United States............................................................... 51 Pediatric Brain Tumor Foundation......................................... 7 Pediatric Oncology Resource Center.................................. 19 Pediatric Services of America............................................... 30 Ped-Onc Resource Center.................................................... 65 People Against Cancer.......................................................... 34 People Foundation................................................................. 76 Peripheral Nerve Sheath Tumor: CureSearch.org............... 11 Pharmaceutical Research and Manufacturers of America................................................ 47 Pituitary Network Association............................................... 7 Planet Cancer......................................................................... 63 Post-Treatment Resource Program..................................... 72 Professional Association of Therapeutic Horsemanship International....................................... 26, 59 Project Linus.......................................................................... 67 Psych Central......................................................................... 19 Quackwatch........................................................................... 44 R.A. Bloch Cancer Foundation....................................... 19, 72 Retinoblastoma International............................................... 11 Ronald McDonald House Charities..................................... 50 Ruritan National.................................................................... 41 RxAssist Volunteers in Health Care..................................... 47 RxHope................................................................................... 47 RxList...................................................................................... 31 Ryan Mullaly Second Chance Fund....................................52 Salvation Army National Headquarters............................... 41 SAMFund for Young Adult Survivors of Cancer................. 52 Sarcoma Alliance................................................................... 12 Sarcoma Foundation of America.......................................... 12 ScriptSave.............................................................................. 47 Self-Help Sourcebook Online: Links to Cancer Organizations..................................................................... 19 Send Kids the World.............................................................. 63 Shadow Buddies.................................................................... 67 Shiva Foundation................................................................... 80 Shriners International and Shriner’s Hospitals for Children........................................................ 41 Sibling Support Project......................................................... 64 Silver Lining Foundation....................................................... 60 Social Security Administration............................................. 42 Songs of Love Foundation.................................................... 67 Southeastern Brain Tumor Foundation.................................8 Special Love............................................................... 19, 42, 60 Special Wish Foundation...................................................... 56 St. Jude Children’s Hospital................................................. 42 Starbright World..................................................................... 63 Starlight Children’s Foundation..................................... 19, 67 Stephen T. Marchello Scholarship Foundation, The................................................................. 52 Studio International............................................................... 67 Index | 87


Stupid Cancer........................................................................ 68 Stylish Noggins...................................................................... 68 Sunshine Foundation............................................................ 56 SuperSibs!........................................................................ 52, 64 Support for People with Oral, Head and Neck Cancer............................................................... 12 Susan G. Komen for the Cure................................................. 8 Sussex County Medical Association Neutropenia............. 14 Talia Seidmann Foundation.................................................. 68 Taybear...................................................................................68 Teens Living with Cancer: Melissa Living Legacy Foundation...................................................... 63, 64 TeensHealth........................................................................... 20 Testicular Cancer: Medlineplus.gov...................................... 9 Transplant Recipients International Organization............. 28 Traveler’s Aid International.................................................. 42 Tumor Free............................................................................... 8 U.S. Department of Health & Human Services - Office on Disability........................................... 26 U.S. Department of Labor.....................................................44 U.S. Equal Employment Opportunity Commission............ 44 Ulman Cancer Fund for Young Adults, The............. 19, 52, 63 Uniformed Service Organization.......................................... 42 United Healthcare Children’s Foundation.......................... 42 United Methodist Association of Health and Welfare Ministries....................................................... 42 United Negro College Fund.................................................. 52 United Network for Organ Sharing...................................... 28 United Ostomy Association.................................................. 26 United Special Sportsmen Alliance...................................... 56 Urology Health....................................................................... 13 Visiting Nurses Association of America.............................. 30 Vital Options International................................................... 20 Volunteer Pilots Association................................................. 49 Von Hippel Lindau Family Alliance..................................... 14 WebMD................................................................................... 31 Wellness Community................................................ 20, 65, 72 Western Wishes Foundation................................................. 56 Wheel to Walk Foundation ................................................... 26 Wheelchair Foundation................................................... 26, 42 Why Not the Best.................................................................. 31 Wigs for Kids.................................................................... 42, 68 Wishing Well Foundation USA............................................. 57 World Health Organization, USA......................................... 22 Yahoo Groups........................................................................65

88 | Index


Kids' Cancer Pages, 4th Edition  

The National Resource Guide for Families and Caregivers of Children and Teens with Cancer

Advertisement