MOVING TOWARD A WORLD FREE OF MS Spring 2012• Issue 2
Western Pennsylvania Chapter
Advocacy in the Western PA Chapter BY JOHN PLATT
Five years ago, MS got in the way of my career. At that point, I decided to fight back and take ACTion... ACTivism: (noun) the policy or ACTion of using vigorous campaigning to bring about political or social change. During MS Awareness week, I encourage you to join me and become ‘ACTtive’. Today terms like CDMRP, Neurological Disease Surveillance J ohn Plat t (far le f t) pic tured with mem be r of the Wes ter n PA Chapter Staf f at the 2 011 System, Lifespan Respite Care, and Adult Protective Services roll off my tongue. It was not Advo cac y Conference in Wa shin g ton D.C . always such. My first ACTion was a simple email to my congressman requesting him to learn more about our disease and join the Congressional MS Caucus. To date, all four Southwestern PA congressman are members of the Congressional MS Caucus! To date, MS research has received over $20M through the CDMRP(Congressionally Directed Medical Research Program) over 5 years! To date, the Pennsylvania Adult Protective Services Act is in effect! To date, we are ACTively seeking you!
INSIDE THIS ISSUE:
We are but only ripples in the ocean, but once combined with other ripples a tidal wave of hope can be created in the “Sea of Change”. Once again, I encourage you to take ACTion and join me in the fight against MS! Continued on Page 10
Living with MS Page 14
MS Teleconference Page 7-10
MS Awareness Week Page 12-13
1-800-344-4867 Publication of the National Multiple Sclerosis Society Western Pennsylvania Chapter 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 Chairman David Strassburger, Esq. Executive Vice-Chair Sandra L. Bettor Treasurer Douglas Miner, Esq. Secretary Pamela A. McCallum, Esq. Chapter President Anne Mageras Newsletter Editor Lauren DiMaria Newsletter Designer Jennifer Staab Board of Trustees Ellie Bernstein Robert S. Bernstein, Esq. David Betts Scott Conley Roberta Sciulli-Carlson JoEllen Lyons Dillon, Esq. Arthur J. DiDonato, Jr. George Farah Franco Harris Rock Heyman, M.D. Rich Hixon Jerry Hogenmiller, Esq. Joan Campasano-Hoover Geoffrey Kelly David J. Malone Pamela McCallum, Esq. Carleen McGann David Minnotte Jane Moriarty, Esq. George Neelan Robert Nitzberg, M.D. Susan Fuhrer-Reiter, Esq. Ken Rice Thomas Scott, M.D. Lou Weiss Thomas D. Wright, Esq. Samuel Zacharias 2
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If you or someone you know has MS studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at www.nationalmssociety.org or 1-800-FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Societyâ€™s Mission is: We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. ÂŠ 2012 National Multiple Sclerosis Society, Western Pennsylvania Chapter
WESTERN PENNSYLVANIA CHAPTER OFFICES Western Pennsylvania Chapter, 412-261-6347 1501 Reedsdale St., Suite 105 Pittsburgh, PA 15233
Keystone Branch, 814-696-1017 506 Third Avenue, Duncansville, PA 16635 Erie Branch, 814-464-2900 2115 West 8th St., Erie, PA 16505 Serving 26 Counties in Western Pennsylvania: Allegheny, Armstrong, Beaver, Bedford, Blair, Butler, Cambria, Cameron, Clearfield, Crawford, Elk, Erie, Fayette, Forest, Greene, Indiana, Jefferson, Lawrence, McKean, Mercer, Somerset, Cambria, Venango, Warren, Washington, Westmoreland.
WESTERN PA CHAPTER
The Western PA Chapter Welcomes: Cyndi Zagieboylo, President & CEO BY ANNE MAGERAS On October 1, 2011, the National MS Society welcomed a new President & CEO, Cyndi Zagieboylo. In selecting a new leader, the National MS Society, Board of Directors looked for someone who could build on the strengths and the extraordinary successes we achieved under the leadership of our past CEO, Joyce Nelson, who retired last fall. “Cyndi knows the Society inside and out, and is perfectly positioned to become the Society’s next CEO,” said Tom Kuhn, former National Board Chair and Search Committee Member. “Her vast experience from the chapter to regional to national leadership, and her strategic thinking and results-driven track record speak to her strengths as a leader. I reached out to Cyndi and asked her to share with the Chapter membership her fondness for Western Pennsylvania: “My husband and I spent 3 years in the Pittsburgh area, living in Delmont, while he studied for a Doctorate in Psychology at Indiana University of PA. I had left my position with the National MS Society in Massachusetts in order to pursue this goal with my husband, but the MS mission never left me. My first year (1988-89) in the area, I worked at the University of Pittsburgh in Oakland and commuted through the Squirrel Hill Tunnel every work day. I was the Program Director for an AIDS clinical trial unit conducting Phase I and II trials with people who had AIDS or AIDS related complex (ARC) and I loved being on campus doing this important work. I remained passionate about the MS cause, however, and quickly introduced myself to the staff at the chapter and began volunteering. I remember working on an MS lecture series, an employment support group, and I got to meet lots of passionate people as National Multiple Sclerosis Society’s United the chapter launched a programs committee. Way workplace giving designation code for Allegheny County only is: In January of 1990, I rejoined the National MS Society as an employee working at the National level of the organization expanding programs and services throughout the Or call your local United Way office to check country. My career developed from there, but Pittsburgh will always hold a special place on the code number for your county. in my heart.”
1 800 344 4867
SOCIETY WORKSHOPS A POINT OF CONNECTION BY HELEN RUSSON
Nadja (middle), diagnosed in 2008
From the moment the doctor told me, “You have MS,” everything changed. I felt a wide range of emotions: relief (because I didn’t have a brain tumor), anger (although I wasn’t sure who to be angry at) and fear of the future. What was this disease, and how would it impact me and the people who were important to me? I had no idea what my new life would be like, or how to get started on it. Like many people, I first turned to research. This was in 1997, before the Internet was in full swing (at least at my house). So I went to the library, trying to learn about MS. I had heard about the National MS Society, but for days I was hesitant to call the number. Finally, I made the call, which led to my second-most important discovery of the year: my chapter was about to begin a series of in-person workshops for people who had just been diagnosed with MS. Each workshop featured a different guest speaker. On the first evening, a neurologist spoke in practical terms about the disease. Her 4
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presentation included a slideshow illustrating how white blood cells inexplicably start attacking the protective coating of the nerves (myelin sheaths). She had actually brought a ruptured electrical cord, exposing the frayed wires underneath. That simple prop was probably the most effective tool of my MS education. It helped me realize that if I’m having a hard time lifting my leg, it’s not because I’m lazy or weak-willed. It’s because of those well-meaning (but very misguided) white blood cells. Afterward, the neurologist answered our questions about the day-to-day realities of living with MS. She also talked about some ongoing clinical trial studies and invited us to learn more about them. (I ended up participating in several such studies, all of which were very rewarding.) Each workshop was similarly organized. A speaker would give a presentation and then answer questions. We were introduced to experts in medicine, mental health, yoga and nutrition. At some point each evening, we broke into small groups to discuss what we had learned. I remember that one of the most fun and empowering activities was learning how to get a good workout while sitting down. (Who knew?) Throughout these programs, chapter staff told us about their services and resources, which included numerous opportunities to volunteer. I soon started volunteering and I haven’t stopped yet!
New frontiers Of course, things have changed since 1997. While many chapters continue to offer in-person workshops similar to what I experienced, they have also begun exploring additional ways to help people newly diagnosed with MS connect to the Society— and to each other.
Teleconferencing, videoconferencing and webcasts are a few options. “We plan to have a program in one site and broadcast that program to other sites across our region,” said Roberts. Some chapters are also trying out new formats for workshops, such as offering quarterly workshops with a nurse, or teaming up with an area MS center or university to provide workshops led by doctors. Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/ onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us or 1-800-344-4867 to be connected to an MS Navigator®. MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both
“Almost every home now has access to the Internet and that seems to be a primary source for An in-person workshop at the information, Central North Carolina Chapter especially for tech-savvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and creative ways to reach people.”
worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact. Helen Russon is a volunteer at the Oregon chapter.
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge
JOIN THE MOVEMENT® Transport U, Inc. Accessible Transportation (doctors appointments/shopping/ social appointments and more) A Western PA Based spcialized transportation company with a focus on personalized trips. Photo Call today to schedule a trip or inquireCredit: about our services, 412.281.8350Ed Kashi TOLL FREE NUMBER 1 800 344 4867
MOVI NG FORWARD: A PROG R A M FOR N E WLY DIAG NOS E D This program is geared to individuals diagnosed 24 months ago or less. Join us for a one day educational seminar: When: Saturday, March 31, 2012 Time: Registration 8:30, Program is 9:00 am—2:00 pm Where: Doubletree by Hilton-Pittsburgh-Greentree 101 Doubletree Drive, Pittsburgh PA 15205 Includes: Continental Breakfast and Lunch Program topics include: • Coping with Emotional Changes • Dealing with Stress Management, Anxiety, Depression • Alternative and Complementary medicine • Employment/Disclosure Susan, dia gnosed in 1995 • Lifestyle Changes • Ask the Doctor– this is an opportunity to ask questions about MS & Treatments • Peer Panel—This is an opportunity to hear and learn from peers who have MS Presenters include: Pamela Dixon - Director of Programs, Education & Outreach with NMSS Carol Schramke, Ph.D.—Neuropsychologist AGH MS Treatment Center Carol Chieffe, RN, BSN, MSCN, - Nurse AGH MS Treatment Center Thomas Scott, MD - Neurologist, Director of AGH MS Treatment Center Jerry Hogenmiller, Esquire
Re gis tration openin g soon onine or call 412-261- 6347
LINKS TELECONFERENCE SERIES
9 OPPORTUNITIES TO LEARN MORE ABOUT MS FROM THE COMFORT OF YOUR HOME We are pleased to present a series of teleconferences for clients with MS and their families entitled “LINKS.” Whether you just received a diagnosis of MS or have been living with it for a long time-the goal of this series is to “link” you with information and tips on how to maintain your quality of life in the years ahead. This nine week series will run Tuesday nights (7-8 pm) from April 3 through May 29, 2012. Each call will be conducted using a toll-free number, so you can call from the comfort of your home. Participate in several calls or just the one that interests you.* *You will need to register individually for each call you wish to attend, nationalMSsociety.org/PAX 6
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April 3 Health Insurance April 10 Mental Gymnastics April 17 Improving Your Lifestyle: Financial April 24 MS & Depression May 1 At Home with MS May 8 Pain in MS May 15 Walking with MS May 22 Care Options–When Help is Needed May 29 MS Research Update
F R E E F R O M FA L L S A COMPREHENSIVE FALL PRE VENTION PROGR AM FOR PEOPLE WITH MS Western PA Chapter will host this 8 week Program in the Spring of 2012 Please contact Pam Dixon at the Chapter Office for More Details Studies indicate that falls are quite common among people with MS and are often associated with injuries and have a negative impact on their quality of life. The National MS Society has developed a new fall prevention program—an 8-week curriculum, designed for people living with MS who are ambulatory but who may be at risk for falling. Discussion, exercise, along with group and individual activities are elements of this program. Participants will learn about fall risks, tips and strategies to reduce risk for falling, and exercises to enhance balance and safety. A supportive group atmosphere and expert instructors in the field of rehabilitation, health and wellness will help each participant develop a personal plan to maximize safety. The 2-hour program each week will have two parts: a discussion component focused on awareness of issues related to falls and an exercise component directed to improving postural alignment, balance, endurance and mobility. Through this course, participants will: • Increase awareness of the prevalence of falls among people with MS and the risk factors that may contribute to falls. • Identify strategies they can employ to prevent falls and develop a fall prevention action plan. • Engage in and develop a home fitness plan that addresses balance, endurance, and strength aimed at reducing fall risk. • Increase their confidence in minimizing fall risk and in managing falls if they do occur. • Identify additional community resources to implement a fall prevention action plan. A re you a n o lde r Contact: Pamela Dixon at 412-261ad u l t? 6347 or email@example.com to learn more about this program and determine if Contac t Silver it is right for you. An application and other Sneakers ab out their e xercise registration materials will be provided. program and to locate a facilit y near you! w w w. silversneakers.com Toll -free: 888 - 423 - 4 632 TOLL FREE NUMBER 1 800 344 4867
20 1 2 E mpl o y m e nt Te lec onfe r e n c e Ser ies The W e s te r n P A C h a pt er o f t he N at i onal M S S oci et y w i ll be part i ci p a tin g in the 2 0 1 2 Em pl o y m en t T el ec o n f erence S eri es hos t ed t he N at i onal Capita l, Ne w Y o r k C ity -Sout h ern N ew Y o rk , and Great er Delaw are Valley. Th ur sd a y, M a r c h 8 , 7 – 8 p . m. Hom e -Ba s e d E m p l o y m en t : What Emp lo y e rs W ant. Learn f rom act ua l e m p l o y e r s w h a t t hey l o o k f o r w hen hi ri ng people t o w ork f rom home . Th ur sd a y, M a r c h 2 2 , 7 – 8 p . m. Do n ’ t D o I t A l o n e: E m p l o y m e nt Re s o urc e s . Learn abou t agenci es a n d r e s o u r c e s a va i l a bl e t o hel p y o u gai n and m ai nt ai n em ployment . Re g ist e r By T el ep h o n e: R eg i s t er f or any calls i n t he E m ployment Tel e c o nfe r e n c e S eri es by c a l l i n g t he N at i onal M S S oci et y at 1- 800- 34 4 -4 8 6 7 at l e a s t o ne w eek pri o r t o t h e c all(s) i n w hi ch you w ou ld li k e t o partic ipa te . To P a r t i cipa t e: A ppro x i m a t el y one w eek pri or t o t he call, you w i ll r e c e ive call -in ins tr uc t i o n s a n d a n i n f ormat i on pack et vi a emai l.
EDUCATIONAL TELECONFERENCE SERIES 2011-2012
Thursday, November 10, 2011
Januaryis 24, 2012 Registration free Parenting – Skills Where My reserve your isspace Developing a Memory? today! Cognitive Tool Kit for
Changes in MS
Call 1-800-344-4867, 6:30 - 7:30 p.m. Get help identifying option 1Learn or visit about cognitive your strengths and issues in MS and its nationalMSsociety. challenges managing impact on everyday MS and parenting life. to help you org/PAX toTools register or responsibilities. manage and adapt to Focus will befor on the symptoms morecognitive information. importance of 6:30 - 7:30 p.m.
communication, planning, prioritizing and a support network.
will also be explored.
Thursday, March 15, 2012
Thursday, May 3, 2012
Wednesday, July 18, 2012
Thursday, September 13, 2012
Emerging Therapies for MS Treatment
Using Assistive Technology
Management and Rehabilitation of Advanced MS
Staying Healthy With Vitamins and Oral Supplements
6:30 - 7:30 p.m.
6:30 - 7:30 p.m.
Learn about advanced MS and the current status of research and practical applications for symptom management
Learn about the pros and cons of oral supplements and discuss some of the most commonly used vitamins, minerals and herbs.
6:30 - 7:30 p.m. The emergence of new MS therapies is exciting and challenging for people living with MS and the clinicians who treat them. An MS neurologist will discuss the emerging MS therapies to promote a better understanding and educate you about treatment options.
6:30 - 7:30 p.m. Learn about a variety of assistive technologies that can enable people living with MS to function better at home and work. Resources that may be available in the community for funding equipment will also be addressed.
Speakers: *John DeLuca, PhD Speaker: VP for Research, Kessler * Mark Surabian Speakers: Foundation Research Assistive Technology *Nancy Lowenstein, Center, Professor in Practitioner, Pace OT Physical Medicine & Speaker: University, NY and Mount Auburn Rehabilitation and * Stephen Krieger, owner/creator of Hospital Comprehensive Neurology and MD web-based resource MS Care Center and Neuroscience at the Corinne Goldsmith Assistant Clinical Cognitechcafe.com University of Medicine Dickinson Center for Professor, and Dentistry of New MS at Mount Sinai Boston University, MA Jersey Medical Center, New *Ronnie Hochberg, * Jeffrey Gingold York, NY MS, CRC, LMHC Mount Sinai Medical Person living with MS and author of “Facing Center Department the Cognitive Challenges nationalMSsociety.org of Psychiatry, New JOIN THE MOVEMENT: of M S” and “Mental York, NY Sharpening Stones.”
Speaker: * George H. Kraft, M.D., M.S. Director of the Western MS Clinical Center and Alvord Professor of MS Research; Professor, Rehabilitation Medicine and Neurology at the University of Washington in Seattle
Speaker: * Patricia Melville, NP-C Stony Brook MS Comprehensive Care Center, Stony Brook University, NY
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DO YOU NEED ACCESSIBLE TRANSPORTATION? The National MS Society works with the community to find appropriate transportation for folks that need an accessible ride. A person’s transportation needs may include going to a medical appointment, to the grocery store, to a sporting event, to a graduation ceremony, to church services, or to a MS fundraising event or an educational program. The counties in Western PA have a Shared Ride program where you would share a ride with other people in your community to go to and from your place of intent. The web link provides the contact information for your county: http://www.dot.state.pa.us/BPTMAP/index.htm You are encouraged to contact them to sign up and to use their service which helps to keep more of your money in your pocketbook because of the Pennsylvania subsidy. Most people think that it is only for people 60 years or older. This program is for people with a disability (MS) and/or for people whose age is 60 or over. If you questions about transportation direct financial assistance or other questions, please contact Brian Sibenac or Mary Lee Jackson (northern counties) at 412-261-6347 or 1-800-344-4867. ADVOCACY CON’T. FROM PAGE 1 John is an active member of the NMSS Western PA Chapter, member of the Pennsylvania Collaborative Advocacy Network (PACAN), and member of the 2011-2015 Strategic Response We are Activists Goal Steering Team. John was diagnosed on September 6th of 2005. A day he will never forget! When a MRI confirmed that all of the crazy symptoms he had been dealing with since January of 2003 were multiple sclerosis. He did not show any lesions on an MRI until May 2005 and still today MRI’s do not present many lesions despite all his symptoms and disease progression. MS has affected John’s daily life but it has allowed him to refocus his limited energies towards what means the most to him. His two daughters! His wife and girls are very supportive and despite his cane, heat intolerance, blurring vision, balance issues/vertigo (including falls), numbness, pain and fatigue. They help him embrace each day as it is and show him why he has to push forward and fight! Submission is not an option for John and his family. Join John and other MS Advocates this March during MS Awareness Week, from March 12 to 18. See pages 12-13 for the Western PA Chapter MS Awareness Week Activites.
10 JOIN THE MOVEMENT: nationalMSsociety.org
BY KIMBERLY CALDER
With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area. The National Conference of State Legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. The National Academy for State Health Policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and information-sharing between policymakers, activists and others working on health reform implementation. The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many
young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit www.MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy. MS ACTIVISTS HELP ADD MS TO COMPASSIONATE ALLOWANCES LIST Thanks to hard work by Society activists, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly. T he L if t P rofessional
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TOLL FREE NUMBER 1 800 344 4867 11
KEEPING UP WITH HEALTH REFORM
Mark your calendars for March 12-18, 2012 when people all over the nation will come together during MS Awareness Week to share, educate and build awareness. MS is a destroyer of connections—it disrupts signals, separates minds from bodies and pulls us away from each other. It’s only fitting that connections are the greatest enemy of MS. What if we were able to connect everyone who has MS with those who treat and research the disease? What if everyone affected by or interested in MS would stand together to work as a team to overcome this disease? Let’s use MS Awareness week to start forming these connections: Join the MS Online Community As part of our commitment to connect with the MS community how, where and when they want to connect, and to increase opportunities for people to come together in a secure online environment to learn, share, meet and move their lives forward, the Society is launching an online community on March 12, 2012 - visit MSconnection.org and join the conversation! Do it Yourself Events During MS Awareness Week Get involved by attending an event near you or hosting an event of your own. Consider holding fundraisers and awareness events in your community during MS Awareness Week and the entire month of March. To learn more about hosting your own event, please contact Susan by calling 412-261-6347 or email her at firstname.lastname@example.org. Fun Ways to Raise Awareness: • Organize a “Wear Orange” day at your work or school • Bring an Orange treat to work or school and post a sign with MS Facts • Conduct a Facebook campaign asking your friends to dedicate their status or profile picture to the cause • Plan on sending out “orange” emails and include an MS Awareness Week tagline • Enter our photo contest: post photos to our facebook page! Show us what “MS=” means to you, or post the best photo showing how you raise awareness. Winners will receive special MS Goody Baskets • Decorate a local statue or landmark with orange - and post a picture on our Facebook page • Put up chapter fundraising event posters. Call us for copies, and post at your favorite coffee shop, community center, gym, library, etc! • Register now to participate or volunteer at your local Walk MS or Bike MS Events
12 JOIN THE MOVEMENT: nationalMSsociety.org
BY ERIN SPAID
Recently, I read an article titled, “20 Ways to Bring Goodness into your life.” Below the title were instructions for life, as written by the Dalai Lama. The list in its entirety is noteworthy, but there were three instructions in particular that I felt really summed up what I am trying to achieve with the launching of my company, My Green Naturals. 1. Be gentle with the earth 2. If you want others to be happy, practice compassion. 3. If you want to be happy, practice compassion. My Green Naturals fits these criteria by creating health and skin care products using only 100% all-natural ingredients and donating 10% of all profits to the Pittsburgh chapter of The National Multiple Sclerosis Society. My products currently consist of organic and natural lip balms, body scrubs, and hand and body butters. In the future, I hope to offer earth friendly cleaning products as well. All are completely void of earth damaging ingredients such as parabens and sulfates and when packaging the items, I try to only use recyclable, renewable, and sustainable elements.
generosity, and compassion. Being a part of the search for a cure is my way of saying thank you for these values, the same values I want to pass on to my daughter. During MS Awareness Week, My Green will be going Orange! I will be introducing an exclusive line of Sweet Orange scented lip balms, body scrubs, and body butters. Whenever you purchase one of these items I will donate an extra 10%, that’s 20% of the profits to The National MS Society. www.mygreennaturals.com
We’re Helping The National MS Society
To support National MS Awareness Week, SmileyCookie.com is offering:
One dozen orange and white Smiley® Cookies for only $14.99 Two dozen orange and white Smiley® Cookies in a gift box for only $29.99 Go to SmileyCookie.com and click on the MS Cookie offer banner or category page. Over 20% of the price is being donated to MS. Offers are good through the month of March. Available online only.
I wanted to donate 10% of My Green’s profits to The National Multiple Sclerosis Society because of the people in my past and present that live with MS and have taught me the value of kindness, TOLL FREE NUMBER 1 800 344 4867 13
MS AWARENESS WEEK
CREATIVELY CARING FOR A CAUSE
Present this ticket to your server and
Western PA Chapter, National MS Society FUNdraiser!
20% of your lunch, dinner & carryout sales will benefit National MS Society
Monday, March 12th
20% of your lunch, dinner & carryout sales will benefit National MS Society Flyer distribution on Max & Erma's property is prohibited and will result in the forfeiture of your organization's entire donation.
COUPLES NIGHT OUT JRâ€™S LAST LAUGH, ERIE, PA
Join us for a laughable evening at Jrâ€™s Last Laugh Comedy Club (1402 State St., Erie) on Thursday, April 5th. The comedy (and smokefree!) show will feature Jimmy Carroll! Cost is $20.00 per couple, Scholarships available. Reserve your seats by Monday, March 12th March 25th, call 814-464-2900.
Western PA Chapter, National MS Society FUNdraiser!
2078 Interchange Rd., 814-860-3332
Visit maxandermas.com to view our menu & learn about our Good Neighbor Rewards program. Proceed donation does not include gift certificate sales.
Help Drive Western MS Away by PA Chapter, National MS Society Donating Your Vehicle
he donation of your car, truck, motorcycle or thisto ticket your server trailer canPresent be used helptofund criticaland research 20% of your lunch, dinner & for multiple sclerosis. We make donating your carryout sales will benefit vehicle simple. National MS Society
Unlike other auto donor programs, the National MS Society receives 100% of the proceeds from the sale of your vehicle. Proceeds fund programs and Erie MS and research that services for people living with 2078 Interchange Rd., 814-860-3332 will get us closer to a cure.
20% of your lunch, dinner &Your vehicle donation is tax deductible. The TEAMS HELPcarryout STRIKEsales OUTwill MS! benefit National MS SocietyVisitis amaxandermas.com non-profit, 501 (c) (3) to view our menu & learn our your donation is taxabout deductible to National MS Society corporation, soGood Visit nationalMSsociety.org/ Neighbor Rewards program.
theofextent allowable by law. Please refer to your tax Flyer distribution on Max & Erma's property is prohibited and will result in the forfeiture your Proceed donation does not include PAX or call 412.261.6347organization's to entire donation. giftdetails. certificate sales. professional for specific learn more about how the We accept vehicles in any condition. Pittsburgh Pirates, Altoona Curves, Erie Seawolves are Please visit www.AUTOS4MS.org or call Creating a World Free of MS! 1-877-672-8864 for more information.
14 JOIN THE MOVEMENT: nationalMSsociety.org
Present this ticket to your server and
MS GOLF CLASSIC
Western PA Chapter, National MS Society FUNdraiser!
VO LU NTE E R! YOUR TIME AND TALENT CAN MAKE A DIFFERENCE! If you have the desire to get involved and be part of making a positive difference, consider volunteering with the Western Pennsylvania Chapter of the National MS Society.
If you prefer direct support in the community, become a friendly visitor or lend a helping hand to someone who is living with MS. Volunteers are a driving force of the movement to cure MS. Join the movement today and use your gifts of time and talent to enhance the lives of those living with MS.
Visit our website, www.nationalMSsociety. org/PAX for more information on volunteering Consider using your skills to: • Help organize or promote a fund-raising event for the Western Pennsylvania Chapter. Or you can call the office at 412.261.6347. (walk ms, bike ms, etc.) • Advocate on behalf of those with MS • Assist with office duties at one of our locations
Kids Camp, July 27th - July 29th, 2012 Refreshing Mountain Camp The National Multiple Sclerosis Society is pleased to extend an invitation, to children (ages 7-15) of a parent or guardian who has multiple sclerosis, for a weekend of fun and learning at Refreshing Mountain Camp. Come join children from other chapters of the National Multiple Sclerosis Society for a weekend of swimming, zip lines and more. This special weekend offers a great opportunity for kids who have a parent or guardian with MS to connect with one another in a supportive environment. Incredible location...tons of fun…don’t miss it! PACKAGE INCLUDES: • Room accommodations (3 days & 2 nights) • Friday lunch and dinner • 3 meals on Saturday & Sunday (Breakfast & Boxed Lunch) • Use of the camp facilities. COST PER WEEKEND: • $25 per child (ages 7-15) • SCHOLARSHIPS ARE AVAILABLE • Space is LIMITED so register early! • Payment is expected with the completed application on June 18, 2012. QUESTIONS: If you have any questions about Kids Camp, please call Pam at the Western PA Chapter Office at 412-261-6347 TOLL FREE NUMBER 1 800 344 4867 15
COOLI NG F I NAN CIAL A SS IS TAN CE PROG R A MS There are different financial assistance programs forcused on cooling for those people who have symptons that are affected by the heat. Cooling vests come in different styles, colors, and sizes. There are also cooling accessories which include: • wrist wraps • neck wraps • scarves • hats The Western Pennsylvania Chapter offers funding for air conditioners which includes: • window air conditioners • portable air conditioners • central air conditioners • repairs for air conditioner units and in vehicles There are funding and time limits. There are procedures and required paperwork to qualify. Call early before the products run out! The summer weather will be here sooner than you may think. Order now to be prepared for the summer! For more information contact: • Multiple Sclerosis Association of America (MSAA) 1-800-532-7667 www.msaa.com • Multiple Sclerosis Foundation (MSF) 1-888-673-6287 www.msfocus.org (Program from Feb. 1 to June 1) • National MS Society, Western Pennsylvania Chapter 412-261-6347 or 1-800-3444867, nationalmssociety.org/pax, contacts: Brian Sibenac or Mary Lee Jackson (northern counties)
16 JOIN THE MOVEMENT: nationalMSsociety.org
THE DIRT ON ADAPTIVE GARDENING Gardening is one of the most popular hobbies in the United States, one that can benefit people both mentally and physically, as Staci, diagnosed in 1985 well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height—on a patio, balcony, railing, steps, cinder blocks, window ledge or tabletop you can roll up to.” Reiser points out that people need little more than a patch of ground to get started and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out. A garden open to all Enabling Gardens in Angleton, Texas, south of Houston, focuses on containers and raised beds, according to Cynthia Leonard, one of two dozen active volunteers. “We
Participants learn how to use rain barrels and raised beds, and to garden most suitably for their climate. The garden has 18 planter boxes of different sizes, some of which “have a horizontal board across the top where people can sit and work on the bed.”
handles for trowels or extendable hoes, can help make gardening tasks easier. Go to www. abledata.com and search for “garden tools” to get an idea of what’s available.
Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space Laurie Reiser (left) and volunteers and resources. Search online for It also features an A-frame trellis transfer plants to a raised bed. barrier-free, adaptive or called a “cattle panel” that vines, accessible gardening or ask your squash and cucumbers grow on. “Someone in a public library if they have any books on the wheelchair can roll under it and reach right up topic to get an idea of what’s possible. And and pick fruits and vegetables,” says Leonard, then in a few months, enjoy the fruits who was diagnosed with MS in 1997. literally—of your labors! Leonard’s been gardening for seven or eight years, starting with flowers in pots, then moving on to tomatoes. She and her husband “picked beets and mustard greens in January, and we had fresh tomatoes for Christmas dinner,” she says. “It sure is nice to be able to step outside and get good fresh vegetables. I know how they’ve been grown and what’s been put on the soil. Gardening gives me a sense of peace and well-being.”
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Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle filled with cool water. (Call 1-800-344-4867 for information about cooling resources or visit www.msassociation.org/programs/cooling.) Set a timer to remind you when to take a break. Ergonomic gardening tools, such as add-on
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WAYS LIVING TO GIVE WITH MS
welcome groups and individuals, anyone who wants to learn how to do accessible gardening,” she says.
DO YOU SUFFER FROM MS? YOU MAY BE ELIGIBLE FOR SOCIAL SECURITY DISABILITY BENEFITS BY DENNIS LIOTTA, ESQ.
If you have multiple sclerosis (MS), you know that it changes your life. If you have frequent attacks, you may suffer for days, weeks, and even months on end. Depending on the severity of your MS and the types of health issues you experience – problems walking, depression, extreme fatigue, cognitive problems, or other complications – you may not be able to work. Medical bills add up quickly, and because there’s no cure for MS yet, you can’t predict what types of treatment or prescriptions you may need in the future. You may worry about your family’s financial security.
those whose condition(s) makes them unable to work. In other words, your medical records must "prove" the severity of your MS. You may be eligible for SSD benefits if your condition: • Prevents you from working full-time; • Prevents you from working in any capacity – not just in the job you held previously; • Has lasted – or is expected to last – for at least one year; • Is life-threatening. If you meet one or more of these criteria and have paid into the Social Security system within the past five years, you may be eligible for SSD benefits. If you haven’t worked long enough, or recently enough, you may qualify for Supplemental Security Income benefits (SSI) instead. However, the application process is the same for both. Keep in mind that the Social Security Administration will review your medical history and your current treatment plan. They also will evaluate your age, education, and work history. It’s critical that you attend your medical appointments and follow your prescribed treatment plan. Getting Started – Contacting the Social Security Administration
It’s important to know that some people with MS may be eligible for Social Security disability (SSD) benefits. However, the Associated Press has reported that people are flooding the Social Security Administration with applications for SSD benefits. Applications are up nearly 50 percent from a decade ago. Consequently, the government To get started, contact the Social Security currently denies over three-fourths of claims, even Administration at 1-800-722-1213, visit ssa.gov to file online, or make an appointment at a local for people who are entitled to SSD benefits. Social Security District Office. Learning about the Social Security disability The claims process is complex and can take 120 system and knowing what to do if the Social days or more. Those approved receive SSD Security Administration denies your application benefits after their sixth full month of disability. could mean the difference between whether or SSD payments are retroactive from the date not you receive SSD benefits. patients are evaluated as disabled. The money you would receive is based on your average top Am I Eligible for SSD Benefits? earnings over the past 15 years of work history. Note however, that SSD medical benefits do not SSD benefits are designed to provide financial kick in until the 29th month from the date you’re help for those who have physical disabilities and considered disabled. severe mental health conditions. It’s important to know that the Social Security Administration won’t grant benefits to everyone with MS – only 18 JOIN THE MOVEMENT: nationalMSsociety.org
Attorney Dennis Liotta, a partner at the law firm of If the Social Security Administration denies your Edgar Snyder & Associates, has over 20 years of application, don't give up. Remember, the experience and has helped people with physical government denies over three-quarters of claims. and mental disabilities get Social Security disability But you must act quickly. You have only 60 days to benefits. For a comprehensive overview of SSD, with appeal. You can reapply after that time period, but answers to commonly asked questions, download a the application process starts all over again. free guide at: www.edgarsnyder.com/ssd-guide . If you appeal the decision, there will be a hearing, which can take anywhere from 12-18 months. Typically it takes a judge several months to issue a decision. If that doesn't work, you can move on to the Appeals Council. Lastly, you can pursue a case in Federal Court. While you aren’t required to have a lawyer at an appeal hearing, you will definitely need an attorney at the federal level. SSD and SSI are considered lifelong benefits, but the Social Security Administration could terminate your benefits if they believe you’ve earned too much money or if your condition has improved. However, you can appeal the decision within 60 days (10 days to continue receiving checks while the appeal is pending). If you don’t win the appeal, but you continued receiving checks while the appeal was pending, you will have to pay back the money you received during that time period.
Unforgettable Rides. Unbeatable Destinations. Bike To Create A World Free Of MS. June 9 & 10, 2012 Western PA Escape July 28 & 29, 2012 Keystone Country Ride September 22, 2012 Cook Forest River Ride
For more information or to register visit bike MS .org
Increase Your Chances of Being Approved for SSD Benefits Applying for SSD benefits is not an easy process, and the odds are stacked against you. The Social Security Administration reviews thousands of applications a year and denies benefits to many people who may deserve them. If the Social Security Administration denies your initial application, be prepared to act quickly. You have only 60 days to appeal. If you suffer from MS and are struggling financially because you can’t work, you can help yourself by reading everything you can about the Social Security disability system. --
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20 JOIN THE MOVEMENT: nationalMSsociety.org
DIY event, MS Cup Race, Minnesota Chapter
A family in Florida who says they like to “eat, drink and throw a good party” hosts a casino night on behalf of the National MS Society. A fellow in Minnesota sponsors an annual four-day event for four-wheeling enthusiasts to ride on trails in the middle of the woods. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strongman competition, a bike ride in high heels and a tabletop decorating contest. A Wall Street–based poker tournament raised over $850,000, but a $200 bake sale is equally appreciated. Diverse as they are, these events are all Do It Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www. doityourselfms.org, “which gives the same resources as we give to Bike MS and Walk MS participants,” according to Rachael Nuwash, DIY project manager for the Society. These resources include a comprehensive toolkit
that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, where to hold it, publicity, finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more.
DIY event, Kids for a Cure, New Jersey Metro Chapter
People can find out what lessons others have learned and how to create a committee—a core group that will support the effort and whose talents can be utilized. (For example, a friend who’s a graphic designer can design the invitation.) The toolkit also includes flyers, badges and email signature images to download. “The online tools are very intuitive,” said Nuwash, so organizers can easily and quickly reach out to friends, family members and co-workers. “The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.” HOLIDAY GIFT PROGRAM The Western PA Chapter would like to extend their gratitude and appreciation for everyone who in anyway contributed to the success of this program. We provided gifts for over 200 individuals. This program really does stand out and makes an impact to those who are facility bound. We are looking forward to another successful program in 2012. TOLL FREE NUMBER 1 800 344 4867 21
WAYS TO GIVE
DO IT YOURSELF FUNDRAISING GETS BOOST
HELP CREATE A WORLD FREE OF MS THIS MOTHER’S DAY WEEKEND! Travel via bus to the beautiful and breathtaking Chautauqua-Lake Erie Wine Trail (bus will be departing from Cranberry Twp.) Saturday, May 12, 2012 Ticket price is $95 per person We will travel to 5 wineries in Pennsylvania and New York*. Lakeview Wine Cellars, North East, PA Penn Shore Wine Cellars, North East, PA Quincy Cellars, Ripley, NY Conneaut Lake Cellars, Conneaut Lake, PA Wilhelm Winery, Hadley, PA
Commerorative Wine Tour Glass, lunch at the very contemporary & unique Qunicy Cellars, tour wineries and tasting cellars, sample hors d’oeuvres, chocolates and desserts. For more information call 814.464.2901 or visit nationalMSsociety.org/PAX to order tickets. *Must be 21 to participate and have a valid photo I.D. All participates must use the provided transportation. Paid Adver tisement
Has Multiple Sclerosis (MS) Affected You? Join us for this free and interactive live event for people with MS, their families and care partners Thursday, March 22nd
Interact with a leading MS
Robinson Twp. PA
Space is limited so RESERVE YOUR SPOT TODAY!
expert and others living with MS
Learn about a therapeutic option
Location: Buca Di Beppo in Robinson PA Address:
6600 Robinson Centre Drive Pittsburgh, PA 15205
Thursday March 22nd
Speaker Allen Bowling, MD, PhD: Nationally renowned neurologist Multiple Sclerosis specialist in Denver CO
Complimentary Food Sponsored by Acorda Therapeutics®, Inc.
22 JOIN THE MOVEMENT: nationalMSsociety.org
walk to create a world free of MS
MAKE A DIFFERENCE. BE A PART OF WALK MS!
JOIN US FOR WALK MS 2012!
Every step. Every person. Every second spent and dollar raised. They all add up to an experience unlike any other: Walk MS. This is our time to unite and stand strong. TOGETHER WE WILL CHANGE LIVES CREATING A WORLD FREE OF MS. Every dollar raised through Walk MS has the power to change lives. Together we can stop this disease, restore what has been lost, and end MS forever. WALK MS MEANS DETERMINATION, ENCOURAGEMENT, COURAGE & HOPE. — Sharon, diagnosed in 2001
Your help is needed to fund critical research and important local programs. So come celebrate the progress we’ve made and share the hope for a future free of MS! Join thousands who, like you, care about people living with MS. HELP END MS FOREVER. JOIN THE MOVEMENT®. Register and start fundraising today at walkMS.org or www.nationalMSsociety.org/PAX
IT’S EASY TO REGISTER ONLINE!
Save time! Register online at www.nationalMSsociety.org/PAX . To register by mail or fax, complete the form & send today!
Name____________________________________ Address__________________________________ City__________________________ State__________ Zip________________________ Phone____________________________________ E-mail____________________________________ Individual Fundraising Goal_________________ Employer_________________________________ Team Information Team Name_______________________________ Team Captain Name_______________________
I want to participate at: m Beaver 4/29 m Bradford 5/12 m Erie 5/5 m Grove City 5/5 m Indiana 4/29 m Meadville 4/29 m Pittsburgh 4/22 m Washington 4/29
m m m m m m m
Bedford 4/22 Dubois 4/29 Greensburg 4/22 Hollidaysburg 4/22 Johnstown 5/6 Oil Region 4/28 Warren 5/6
GET OUT THERE, MEET OTHERS & SHARE WHAT WALK MS MEANS TO YOU. — Diane, diagnosed in 2008
TOLL FREE NUMBER 1 800 344 4867 23
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047
Western Pennsylvania Chapter 1501 Reedsdale Street Suite 105 Pittsburgh, PA 15233
1 800 344 4867 nationalMSsociety.org/PAX
JOIN THE MOVEMENT IN 2012 MARK YOUR CALENDAR! Now thru March
July 28 & 29
U.G.L.Y. Bar Challenge
Keystone Country Ride
Walk MS 2012
April & May
Cook Forest River Ride
June 9 & 10
Western PA Escape
Colleen McGuire MS Classic
September 6 Anne E. Barnes
August 10 Erie Golf Outing
Fall of 2012 Women on the Move
September 28 LobsterFest,