Praise Reporter September 2013

Sickle Cell Awareness Month September 2013

Sports Star Santonio Holmes Fights Sickle Cell with Son

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September is National Sickle Cell Awareness Month

T

his special edition of the Praise Reporter is important as September is “National Sickle Cell Awareness Month.” This month recognizesd both nationally and in Ohio gives homage to the issues, activities and information surrounding Sickle Cell Disease. Sickle Cell Disease throughout the century has and still remains a silent and often unrecognized chronic health condition.

The staff of the Praise Reporter, in collaboration with state and local programs and individuals affected by this very public health concern, determined that this publication could serve as a vehicle to help bring this issue back to the forefront of the Ohio community. This special edition features articles and events listing that will help you learn more about sickle cell at the local and state levels.

Sickle Cell awareness is near and dear to my heart. Two very close friends of my family are frequently hospitalized due to pain they encounter as a result of sickle cell anemia.

Last year I learned that my nephew was diagnosed with sickle cell trait during his army entrance exam delaying his enlistment. I believe that publications like this will assist our communities in supporting the efforts of the sickle cell programs in your area, as they provide the services and resources desperately needed by affected families.

To help the reader to understand the sickle cell phenomena, the following is some historical insight on this major health concern: • The annual observance of sickle cell disease originated in 1975 when the National Association for Sickle Cell Disease and its member organizations began conducting month-long events to raise awareness about sickle cell disease and the need to address the problem at

the national and local level.

• The Association (now called the Sickle Cell Disease Association of America, Inc. – SCDAA) and its member organizations, sponsored public educational programs and fundraising activities during the month. State and local officials issued Sickle Cell Month proclamations and were introduced to local poster children.

• The SCDAA tradition of selecting a National Poster Child (now called the Child Ambassador Contest) from local candidates began in 1975 with President Gerald Ford greeting the first winner, 8-year- old Bridgette Earby of Oakland California, at the White House. Presidents’ Carter, Reagan, Bush, Clinton and Obama have also greeted the National Poster Child.

• The effort to have Sickle Cell Anemia Awareness Month officially recognized at all levels succeeded in 1983 when the U.S. House of Representatives unanimously passed the resolution, introduced by the Congressional Black Caucus, asking President Reagan to issue a proclamation designating the month of September as “National Sickle-Cell Anemia Awareness Month”. The President, signed Proclamation 5102, which did just that, in September, 1983.

In Ohio, legislation designating the month of September as “Sickle Cell Awareness Month” was signed by Governor Bob Taft in February, 2003.

Since its official recognition, the Ohio Department of Health (ODH) Sickle Cell Services Program in collaboration with a regional network of grantfunded sickle cell projects have dedicated the month leading up to and the month following September to raising public and professional awareness and understanding about sickle cell disorders in Ohio.

September, 2013 marks the eleventh official year designated as “Sickle Cell Awareness Month” in Ohio.

It is our hope that you will have an opportunity to participate in some of the sickle cell health and awareness events around the state.

For more information about Sickle Cell Awareness Month in Ohio or to receive educational materials, contact the Sickle Cell Project in your region.

For more information about the ODH Sickle Cell Services Program, contact the Program Coordinator at 614-466-1549.

Ivory D. Payne Publisher

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Staff Ivory D. Payne Publisher ivory@emailpraise.com Advertisting Agency Spencer 4Higher Media Contributing Writers Cheryl Jones (ODH), Brenda Spencer (Spencer 4Higher Media), Wendy BerryWest (OSCHA) Lisa Shook (Region I), Cynthia Moon (Region II), Kortney Weber (Region III), Tanica Jeffries (Region IV), Ira BraggGrant (Region V) LaTonya Lewis (Region VI) Credits Paper funded in whole or part by the Ohio Developmental Disabilities Council under the Developmental Disabilities Assistance and Bill of Rights Act and the Ohio Department of Health.

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On the Cover Faces of Sickle Cell Disease: Santonio Holmes, Terry Knowles, Barbara Wright, Naja Bagner, Zenia Johnston, Shayla Miller, Savannah Tilmon, Shena Stewart, LaShaye Floyd, Charleston Battle, Demetra Sanderfer, Jaslyn Leech, Ensia Yaisrael, JoAnna Floyd, Jordon Knox, Brandon Lindsay, Julia Wallace, Monique Sims VISIT US ON THE INTERNET...

Inside this issue

Special Sickle Cell Awareness Month Section • • • • • • • • • • • • •

Help Us To Help Those In The Fight For Sickle Cell Disease........................................5 Ohio Sickle Cell Affected Families Association............................................................. 7 Research in Sickle Cell Disease................................................................................... 8 SICKLE CELL PROJECT PROFILE: STATEWIDE........................................................9 SICKLE CELL PROJECT PROFILE: REGION I-CINCINNATI....................................10 SICKLE CELL PROJECT PROFILE: REGION II-DAYTON........................................11 SICKLE CELL PROJECT PROFILE: REGION III-Toledo.......................................12 OSCHA is looking for the next “Ohio Sickle Cell Child Ambassador” .........................13 Sports Star Santonio Holmes Fights Sickle Cell with Son...........................................15 SICKLE CELL PROJECT PROFILE: REGION IV-COLUMBUS................................. 17 SICKLE CELL PROJECT PROFILE: REGION V-CLEVELAND.................................. 18 SICKLE CELL PROJECT PROFILE: REGION VI-AKRON.........................................19 Sickle Cell Sabbath Thank You.................................................................................. 20

More Praise....

Columbus News

• Empowerment Scholarships......................................................................................20 • 3rd Annual Champions of Diversity Awards................................................................ 20 • Ohio Teachers Face New Challenges This School Year..............................................21

Gospel Music, Entertainment

• Hezekiah Walker’s Every Praise #1 At Gospel Radio! ................................................22 • Top 10 Gospel........................................................................................................... 22 • Pastors of L.A.” Show to Premiere Fall 2013 on Oxygen............................................ 23

Eats & Treats

• Create Memorable Meals the Hawaiian Way.............................................................. 24

Money Matters

• 3 Tips to Help Get Your Financial House in Order...................................................... 25

Sermon Notes Journal Luke 11:28 But he said, Yea rather, blessed [are] they that hear the word of God, and keep it.

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Sickle Cell Awareness Month Section

The Ohio Sickle Cell License Plate

Help Us To Help Those In The Fight For Sickle Cell Disease T

he Ohio Sickle Cell Anemia Awareness License Plate originated from legislation which was sponsored and introduced by then Representative Eugene Miller (Cleveland). The bill (HB 412) amended section 4501.21 of the Revised Code and enacted section 4503.90 of the Revised Code to include language to create the sickle cell anemia license plate.

The establishment of the Ohio Sickle Cell Anemia Awareness license plate for sickle cell came into being in September 2008.

The artist who created the artwork for the license plate was Amanda Lazar.

Today, the license plate is still not on the market due to a lack of 500 signatures of people who intend to purchase a set of these plates. In addition there must be a sell of 500 sets of plates per year in order to maintain presence in the market September is National Sickle Cell Month and OSCHA will do a massive license plate campaign in collaboration with members of the Ohio Sickle Cell Affected Families Association. These support groups will

radio radio

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assist in galvanizing faith based congregations and the general public to sign form 4810 (Petition to Establish Organizational Plate). The goal of the campaign is to get the additional signatures needed to put the Ohio Sickle Cell Anemia Awareness License plate on the BMV market by December 2013 for purchase by the general public.

Join OSCHA in this Petition Drive.

Contributions from the sale of the license plate support educational, clinical and social support services for adults who have sickle cell disease in Ohio. Together we can make a difference.

RADIO

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Brenda Spencer

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Emphasize the person rather than the disability.

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Remember, most people with a disability want to be thought of as ordinary people.

Be accurate and non-judgmental.

If you’re unsure about how to describe a disability, ask someone who knows. (For example, ask the person with the disability).

Emphasize abilities.

(For example, say, “uses a wheelchair” instead of “is confined to a wheelchair.”)

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Instead of... birth defect

wheelchair uses a wheelchair bound has a disability

handicapped or disabled

deaf, hard of hearing

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Mongol or Mongoloid

person of dwarf or small/short midget stature crazy, maniac mental illness, or or lunatic the specific diagnosis person with epileptic epilepsy

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Contact: Brenda Spencer(614) (614)348-2667 348-2667 Contact: Brenda Spencer Contact: Brenda Spencer (614) 348-2667 Contact: Brenda Spencer (614) 348-2667 Email: bspencer@spencer4highermedia.com Email: spencer4highermedia@aol.com Email: bspencer@spencer4highermedia.com Email: spencer4highermedia@aol.com www.spencer4highermedia.com www.spencer4highermedia.com Web Website: Site: www.spencer4highermedia.com Web Website: Site: www.spencer4highermedia.com

NEWSPAPER

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Sickle Cell Awareness Month Section

Ohio Sickle Cell Affected Families Association

“The Ohio Sickle Cell Affected Families Association is a statewide organization of local sickle cell support groups across the state whose members are affected and concerned with the sickle cell phenomena”

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he OSCAFA was originally organized in 1984 by individuals affected with sickle cell disease. The purpose of the Association was initially organized under then founding President Doug Drummer.

In 2008, the Ohio Sickle Cell and Health Association, Inc. (OSCHA) was charged by the Ohio Department of Health, Sickle Cell Services Program with reorganizing this statewide voice of consumers. The vision was shared by OSCHA and currently the OSCAFA functions under the OSCHA umbrella. Under the auspices of OSCHA the group has the responsibility for increasing awareness and providing advocacy regarding sickle cell disease in their local communities.

Today the organization has five (5) active adult community groups across the state of Ohio with an average membership of 10-20 individuals per group. The Day-

Affected Family members Jaslyn Leech and Sheila Dickerson

ton Sickle Cell Affected Families Association is one of the oldest support groups in Ohio with the Sickle Cell Affected Families Group of Greater Cincinnati and Kindcaid’s Kindred Spirits of Cleveland a close

second.

Over the past years Columbus has transferred leadership evolving into the newest support group in existence.

S.C.R.E.A.M. (Sickle Cell Reaching, Empowering and Motivating) who has now joined the Association. S.C.R.E.A.M. is an organization founded by JoAnna S. Floyd, a consumer who was diagnosed with Sickle Cell Disease at the age of 2. JoAnna was inspired to create the organization after she saw that patients such as herself were not getting specialized treatment for the disease. JoAnna wanted sickle cell patients to feel that they were important and that they were not alone in their struggles. S.C.R.E.A.M. is dedicated to bringing awareness of Sickle Cell Disease to the community through education, networking and advocacy for a cure. Their mission is to positively impact the lives of not only sickle cell patients, but their friends and

families to let them know they are not alone in their fight.

Another new addition to the sickle cell family of support groups across the state is the NEO Sickle Cell Day Clinic. The organization located in Akron, Ohio was founded by Zenia Johnston an adult affected by the sickle cell phenomena, with a vision to want to bring more awareness and support to the issue of sickle cell disease in her community. Ms. Johnston is a President and CEO of the organization as well as a Registered Nurse in the Akron area. NEO is also charged as a member of the OSCAFA to enhance awareness in the local area for sickle cell disease through quarterly group meetings and outreach activities.

For more information on how you can be a part of these viable groups for sickle cell disease contact OSCHA at 614-228-0157 or visit the website at www.ohiosicklecell. org.

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Sickle Cell Awareness Month Section Lisa M. Shook, MA, MCHES Cincinnati Children’s Hospital

Research in Sickle Cell Disease

inclusion/exclusion criteria that outline who can participate in a study based on several factors, which is also done to ensure that the research study is right for you.

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esearch has played an important role in sickle cell disease (SCD) over the past several decades. There have been many breakthroughs which have improved clinical care and health outcomes for children and adults with SCD. Examples of important research that has translated into clinical care includes: the use of penicillin to reduce infections in infants and young children; transcranial Doppler (TCD) ultrasound tests to identify children at risk for stroke and monthly transfusions to prevent stroke; and hydroxyurea as a key treatment to help prevent complications from SCD and increase the life expectancy of adults. Without the hardwork of dedicated researchers, and patients and family members passionate about improving outcomes, these advances would not have been possible.

Clinical research will continue to be essential to developing treatment for children and adults with SCD. Exciting new studies on the horizon include improving bone marrow transplantation techniques for SCD; and gene transfer therapy, which uses the patient’s own cells to produce hemoglobin that does not sickle, and could be potentially be a curative treatment.

So what exactly are clinical research studies all about?

Would I Ever Be Part Of A Clinical Trial Without My Permission?

Never. You cannot be enrolled into a clinical study without your written consent.

Someone from the research staff will explain the risk and benefits of the study to you, answer questions, and ask you to sign a written consent form that details step-by-step information about the study.

What Is A Clinical Study?

A clinical study is research that adds to overall medical knowledge and is dependent on participants. There are two main types of clinical studies:

will be beneficial or harmful to patients.

Who Conducts Clinical Studies?

Doctors, nurses, social workers and other health care professionals may be part of a research team.

•

How Do You Know A Clinical Trial Is Safe?

All clinical trials are required to undergo a very rigorous process to ensure they are safe and ethical. All hospitals have an impartial review committee called an Institutional Review Board (IRB). The IRB must approve every clinical trial done at the hospital to make sure it is safe for patients.

Clinical study protocols also have study

•

TOP

WHAT IS SICKLE CELL TRAIT? Sickle cell trait (SCT) is not a disease, but having it means that a person has inherited the sickle cell gene from one of his or her parents. People with SCT usually do not have any symptoms of sickle cell disease (SCD) and live a normal life.

WHAT IS SICKLE CELL DISEASE? Sickle cell disease describes a group of inherited red blood cell disorders.

• In SCD, the red blood cells become hard and sticky and look like a Cshaped farm tool called a “sickle.”

• Sickle cells die early, which causes a constant shortage of red blood cells.

• Sickle cells can also get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These blockages cause repeated 8

Observational studies look at health outcomes and measure something about a patient, and watch to see how it changes over time. It may also include drugs or procedures already part of routine medical care.

Clinical trials (or an interventional study) utilize a specific intervention such as a drug or procedure to see if it

What If I Don’t Want To Participate In A Study?

Not participating is your right. You are not required to participate in research and if you chose not to, you will still receive the same standard medical treatment.

How Do I Know What Clinical Studies Are Currently Enrolling?

There are a few ways to find out more information about current studies. Ask your Sickle Cell Center healthcare team if there are any clinical trials open that may be beneficial for you.

You can also find information about current clinical studies focusing on SCD at ClinicalTrials.gov (http:www.clinicaltrials. gov/ct2/results?term=sickle). Studies listed on this site are registered with the National Institutes of Health.

Frequently Asked Questions About Sickle Cell Trait

episodes of severe pain, organ damage, serious infections or even stroke.

• SCD is inherited when a child receives two sickle cell genes—one from each parent.

WHO IS AFFECTED BY SICKLE CELL TRAIT? In the United States, SCT affects: • About 1 out of every 12 blacks or African-Americans and about 1 out of every 100 Latinos.

• SCT can also affect people whose families come from Africa, India, Central and South America, the Middle East, the Caribbean and the Mediterranean region.

• Approximately 3 million people living in the U.S. have SCT and many are unaware of their status.

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WHAT HEALTH COMPLICATIONS ARE ASSOCIATED WITH SICKLE CELL TRAIT? Most people with SCT do not have any symptoms of SCD, although – in rare cases – people with SCT might experience complications of SCD, such as “pain episodes” or “crises” and, in extreme circumstances, sudden death.

In their extreme form and in rare cases, the following conditions could be harmful to people with SCT: • Increased pressure in the atmosphere (e.g. while scuba diving).

• Low oxygen levels in the air (e.g. when mountain climbing, exercising hard in military boot camp or strenuous athletic training/competition).

• Dehydration (e.g. too little water in the body).

• High altitudes (e.g. flying, mountain climbing or visiting a city at a high altitude).

• More research is needed to find out why some people with SCT have complications and others do not.

HOW WILL A PERSON KNOW IF HE OR SHE HAS SICKLE CELL TRAIT? A simple blood test can be done it find out if someone has SCT. Contact your health care provider, clinic or the Sickle Cell Project in your region for testing availability.

For more information about sickle cell trait and links to other websites, go to: Center for Disease Control and Prevention - http://www. cdc.gov/ncbddd/sicklecell/freematerials.html

Sickle Cell Awareness Month Section

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SICKLE CELL PROJECT PROFILE: STATEWIDE

HIO SICKLE CELL AND HEALTH ASSOCIATION (OSCHA) is a statewide community based nonprofit organization whose mission is to “Provide Education, Advocacy and Support Statewide to Individuals and Families Affected and At-Risk for Sickle Cell Disease”. OSCHA is purposed to meet its mission through collaboration and partnership with local, state and national organizations.

Marketing and increasing the visibility of the issue of sickle cell disease have been a priority. OSCHA began fiscal year 2012 with a statewide media awareness campaign.

Marketing initiatives included this first ever statewide publication , “The Faces of Sickle Cell Disease”, magazine dedicated to information and education of sickle cell disease.

Across the state, OSCHA worked with the Ohio regional sickle cell projects and affected families groups gathering information and distributing the magazine to over 20,000 readers. September was vested in increasing educational opportunities for consumers in the state. Through the Empowerment Scholarship Fund two individuals in Ohio were chosen to attend the Sickle Cell Disease Association of America, Inc. national convention.

The 2013 year continued to earmark some additional statewide firsts. The first Town Hall Meeting for sickle cell disease was held in the city of Toledo in collaboration with the Sickle Cell Project of Northwest Ohio. This

first on-air radio meeting entitled “Sickle Cell Disease: Empowerment through Community Conversation” highlighted the issue of sickle cell disease offering new insight and opened dialogue in the community that had been dormant for many years. In April the 2nd Annual Empowerment Day for Adults Affected by Sickle Cell Disease was held in collaboration with the Cincinnati Comprehensive Sickle Cell Center.

Individuals, caregivers and families across the state attended this empowerment event in order to learn, share, support and grow in the phenomena of sickle cell disease. Additionally, the event opened up the opportunity for celebrity spokesperson Santonio Holmes (NY Jets) to join the crowd in an unprecedented face-to-face Town Hall Meeting at Columbus State Community College. Advocacy is imperative to the work of OSCHA as a change agent, which must be addressed on a local, state and national level . This has been realized through the work of the Sickle Cell Statewide Advisory Committee (SAC) an arm of OSCHA for advancement of sickle cell disease. The SAC solidified its influence, by the development of a statewide policy brief and educational brochure. Finally, OSCHA as the Ohio Chapter of the Sickle Cell Disease Association of America (SCDAA) partnered in national advocacy activities by initiating an Ohio statewide letter writing campaign concerning the re-instatement of the legis-

Ohio Sickle Cell and Health Association 309 South Fourth Street Suite 212 Columbus, OH 43215 Phone: (614) 228-0157 http://www.ohiosicklecell.org

patients and families with sickle cell disease Representative to local, state and national organizations and groups Ohio Chapter of the Sickle Cell Disease Association of America, Inc. (SCDAA)

Counties: Statewide-88 Ohio Counties

Non-grant supported services provided through the Ohio Sickle Cell and Health Association: Patient/client/legislative advocacy for issues related to sickle cell disease Coordinating organization for SCDAA and Ohio Sickle Cell Child Ambassador Competition and scholarship awards Emergency support services for individuals/families with sickle cell disease Annual Consumer Empowerment Day Event (co-organizer with Cincinnati Comprehensive Sickle Cell Center) Social marketing campaigns (funding through Ohio Developmental Disabilities Council) Case management and physician referral (per request)

Standard services: Consumer and professional training and education Statewide public awareness and media campaigns Expanded services and programs: Statewide Sickle Cell Advisory Committee Empowerment Scholarship Fund for educational events (individuals/families with sickle cell disease) Information and referral services for extended family testing Advisory organization to the Ohio Sickle Cell Affected Families Association (OSCAFA) Sickle Cell Sabbath/Sickle Cell Month activities Statewide Sickle Cell Town Hall Meetings for

lated Sickle Cell Treatment Act. All in all, OSCHA as a statewide body continues to do the work to make a difference in the lives of individuals affected by sickle cell disease. It is through these partnerships

Project Director: Wendy Berry-West

and with the help of others who are concerned with the sickle cell phenomena can we truly change lives. ---Please check out the new OSCHA website at www.ohiosicklecell.org

SICKLE CELL AND HEALTH AWARENESS EVENT LISTINGS September 1-30 STATEWIDE “OHIO SICKLE CELL LICENSE PLATE” CAMPAIGN Times vary; contact OSCHA office for specific information Audience: Faith-based organizations and congregations Cost: $FREE Description: Ohio Sickle Cell and Health Association (OSCHA) will launch September Sickle Cell Awareness Month with the re-entry of the “Ohio Sickle Cell License Plate” signing campaign.

This event will be orchestrated in collaboration with the Ohio Sickle Cell Affected Families Association (OSCAFA) local support groups.

Organizer: Sickle Cell Disease Association of America, Inc. (SCDAA)/OSCHA Contact: Wendy Berry-West, (614) 228-0157 September 10 “SICKLE CELL DISEASE: THE INVISIBLE ILLNESS” WEBINAR SERIES (#1) 3-4:00 p.m.

Internet-Contact OSCHA office

for registration and advance sign-up information Audience: Open to the general public and health professionals Cost: $FREE Registration Deadline(s): Register 1-day in advance of webinar series date Description: Three-part webinar series to bring awareness to the issue of sickle cell disease. Series will be launched from OSCHA to participants who sign-up in advance.

Organizer: Sickle Cell Disease Association of America, Inc. (SCDAA)/OSCHA Contact: Wendy Berry-West, (614) 228-0157 September 14 5TH ANNUAL STEPPING INTO SICKLE CELL AWARENESS WALK 9:15 a.m. (Registration) East Technical High School (rain or shine) 2439 East 55th Street Cleveland, OH 44104 Audience: General public and individuals/families affected by

sickle cell disease/sickle cell trait Cost: $10.00 (without walk tee shirt)/$25.00 with walk T-shirt) Description: A 3k walk to raise awareness and visibility of sickle cell disorders in the Cleveland area. Event will include a health fair and resource fair.

Organizer: Kincaid’s Kindred Spirits, Inc. Contact: Adrienne Kincaid (216) 347-1931

to participants who sign-up in advance.

Organizer: Sickle Cell Disease Association of America, Inc. (SCDAA)/OSCHA Contact: Wendy Berry-West, (614) 228-0157

Contact: Wendy Berry-West, (614) 228-0157

September 18 STATEWIDE SICKLE CELL ADVISORY COMMITTEE MEETING

September 17 “SICKLE CELL DISEASE: THE INVISIBLE ILLNESS” WEBINAR SERIES (#2)

10 a.m.-1 p.m.

State Library of Ohio 274 East First Avenue Columbus, OH 43201 Audience: Open to Statewide Advisory Committee Members.

Interested non-members/guests may attend meetings with prior notice to the organizer.

Description: This is an annual meeting of the Statewide Sickle Cell Advisory Committee (SCAC).

Held during National September Sickle Cell Awareness month, members will discuss issues related to sickle cell disease programming and policy.

Organizer: Sickle Cell Disease Association of America, Inc. (SCDAA)/OSCHA

3-4:00 p.m.

Internet-Contact OSCHA office for registration and advance sign-up information Audience: Open to the general public and health professionals Cost: $FREE Registration Deadline(s): Register 1-day in advance of webinar series date Description: Three-part webinar series to bring awareness to the issue of sickle cell disease. Series will be launched from OSCHA to participants who sign-up in advance.

Organizer: Sickle Cell Disease Association of America, Inc. (SCDAA)/OSCHA Contact: Wendy Berry-West, (614) 228-0157

3-4:00 p.m.

Internet-Contact OSCHA office for registration and advance sign-up information Audience: Open to the general public and health professionals Cost: $FREE Registration Deadline(s): Register 1-day in advance of webinar series date Description: Three-part webinar series to bring awareness to the issue of sickle cell disease. Series will be launched from OSCHA

September 24 “SICKLE CELL DISEASE: THE INVISIBLE ILLNESS” WEBINAR SERIES (#3)

September 27 9TH ANNUAL RED AND WHITE CELL-ABRATION 7-10 p.m. (Social/Dinner Hour) Normandy Party Center 30310 Palisade Parkway Wickliffe, OH 44092 Audience: Open to the public Cost: $50 in advance Registration Deadline: September 20, 2013 Description: Annual semi-formal fundraiser event for Kincaid’s Kindred Spirits sickle cell support group to raise awareness and recognize individuals living with sickle cell disease.

Organizer: Kincaid’s Kindred Spirits, Inc. Contact: Adrienne Kincaid (216) 347-1931

For more information: http:// www.sicklecelldisease.org/index. cfm?page=annual-convention September 2013 | praisereporter.com | (888) 978-3790 |

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Sickle Cell Awareness Month Section SICKLE CELL PROJECT PROFILE: REGION I-CINCINNATI

T

Changing the Outcomes in Cincinnati

he Cincinnati Comprehensive Sickle Cell Center (CCSCC) has a rich sickle cell disease (SCD) history with many “firsts.” Dr. Marilyn Gaston started locally-targeted newborn screening for babies in the early 1970’s, which led to a landmark study that showed penicillin could greatly reduce the risk of death from infection in babies with SCD. Additionally, the Center was one of the first nationally funded National Institutes of Health Comprehensive Sickle Cell Centers, beginning in the 1970’s. The CCSCC has been the “first” trailblazer for clinical treatments including using incentive spirometers to prevent acute chest syndrome, and doing the first sibling matched bone marrow transplant for SCD in the United States.

The legacy of striving for excellent clinical care and improving the quality of life for children with SCD continues today.

The Center is currently leading several research studies about SCD. Center Director Dr. Punam Malik is leading the groundbreaking effort to use gene transfer therapy for SCD and will be opening a clinical trial for adults with SCD in the very near future.

The Center is proud to announce our new Hematology Director, Dr. Russell Ware, an international expert in SCD, who has done extensive research about the use of hydroxyurea, as an important treatment for sickle cell, and especially for prevention of stroke. Globally, Dr. Ware launched

the Angolan Sickle Cell Initiative in Africa in March 2011, which led to the newborn screening of over 16,000 babies, identifying several hundred with SCD, who otherwise would have not been diagnosed and would have likely died before their 2nd birthday. Additionally, Drs. Charles Quinn, Theodosia Kalfa and Punam Malik are leading several novel clinical research trials targeting hemolysis, stroke prevention, acute chest syndrome and sickle renal and heart disease to improve treatments for sickle cell disease. The CCSCC has also formed the Ohio Sickle Cell Research Alliance (OSCAR) with regional intuitions including The Ohio State Medical Center, Nationwide Children’s Hospital, Columbus, University of Louisville, and Akron Children’s Hospital, for research studies and educational activities.

The CCSCC has several educational programs throughout the year for families. One such program is an educational program at the Cincinnati Zoo and Botanical Gardens for parents of children ages newborn through six-years old with SCD. The CCSCC also co-sponsors a Sickle Cell Disease Education and Research Day each year for pediatric and adult individuals with SCD in Cincinnati, and it is a fantastic opportunity for families to enroll in current research studies, learn about results from recent research trials, network with other families, and enjoy a day of fun, games and

Cincinnati Comprehensive Sickle Cell Center Cincinnati Comprehensive Sickle Cell Center, Cincinnati Children’s Hospital Medical Center 3333 Burnet Ave., MLC 7015 Cincinnati, OH 45229 (513) 636-7541 http://www.cincinnatichildrens.org/svc/alpha/c/ cancer-blood/blood-disease/sickle-cell Region I counties: Adams, Brown, Butler, Clermont, Clinton, Hamilton, Highland, Warren Standard services available: Newborn screening coordination, counseling and education Free hemoglobin testing Outreach education and training for healthcare professionals and the public Care coordination for pediatric patients diagnosed with sickle cell disease Regional center for hemoglobinopathy educational materials Sickle Cell Sabbath/Sickle Cell Month educational activities

giveaways. The Center also partners with the Ohio Sickle Cell and Health Association for an annual Empowerment Day for Ohio adults living with SCD statewide.

The CCSCC team is dedicated to quality improvement and is currently working on several projects, including a home pain management plan, designed to

Expanded services and programs: “Center Talk” newsletter for pediatric families Annual newsletter for regional healthcare providers Non-grant supported services provided through the Comprehensive Sickle Cell Center at Cincinnati Children’s Hospital Medical Center: Comprehensive sickle cell clinic for pediatric patients, including social work and school intervention program Expanded educational and support programs for individuals/families with sickle cell disease Extensive clinical research studies for individuals/families with sickle cell disease Transition to adult care programs Annual summer camp program Annual National Hemoglobinopathy Counselor Training Course Health Resources and Services Administration Sickle Cell Disease Newborn Screening Program grantee (2011 – 2015) Training/rotation in hemoglobin disorders Project Director: Lisa Shook

prevent the need for frequent Emergency Department visits for children with SCD, led by Dr. Kalinyak. In fact, the CCSCC is participating in a national Hemoglobinopathy Learning Collaborative with 14 other sickle cell centers across the country, in an effort to improve outcomes for individuals with SCD.

SICKLE CELL AND HEALTH AWARENESS EVENT LISTINGS August 29 SICKLE CELL AWARENESS MONTH CINCINNATI KICK-OFF 10 a.m.-2 p.m.

Fountain Square 416 Vine Street Cincinnati, OH 45202 Audience: Open to the general public Cost: $FREE Description: Kick-off event hosted

by Cincinnati Comprehensive Sickle Cell Center to commemorate September Sickle Cell Awareness Month. Information about sickle cell disease, sickle cell trait and free testing opportunities will be available. Be the Match bone marrow donor program will also be onsite.

Organizer: Cincinnati Comprehensive Sickle Cell Center 10

Contact: Lisa Shook, (513) 6367541 September 18 UNIVERSITY OF CINCINNATI HEALTH AND WELLNESS FAIR 11a.m.-2 p.m.

University of Cincinnati (UC) Location of event: McMicken Commons (Corner of Clifton Avenue and Martin Luther King Drive) Cincinnati, OH 45219 Audience: College students and employees of UC Cost: $FREE Description: Annual health and wellness fair hosted by the UC Wellness Center. The Cincinnati Comprehensive Sickle Cell Center will be onsite to provide educational information about sickle cell trait and sickle cell disease.

Organizer: Cincinnati

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Comprehensive Sickle Cell Center Contact: UC Wellness Center, (513) 556-6124 September 18 CITY OF CINCINNATICENTENNIAL II 7-10:30 a.m.

805 Central Avenue Cincinnati, OH 45202 Audience: Open to the public Cost: $FREE Description: Annual health and wellness fair hosted by the City of Cincinnati Healthy Lifestyles.

The Cincinnati Comprehensive Sickle Cell Center will be onsite to provide educational information about sickle cell trait and sickle cell disease.

Organizer: City of Cincinnati Healthy Lifestyles Department Contact: Hannah Hanley, (513)

997-0017 September 28 CINCINNATI WALKS FOR KIDS 3:00 p.m.-Check-in (check website for check-in options) 4:30 p.m.-Walk Cincinnati Zoo and Botanical Gardens 3400 Vine Street Cincinnati, OH 45220 Audience: Patients, families and supporters of Cincinnati Children’s Hospital Medical Center Cost: $25.00 for adults and $5.00 for children 17 and younger. Cost allows for all walkers to receive an official 2013 Cincinnati Walks for Kids T-shirt. All walkers also receive a personal fundraising page and exclusive admission to

the Zoo for the evening.

Description: This annual walk offers fun for the whole family, including zoo concessions; face painting, visits from the Zoo’s animal ambassadors and several health stations where you can take part in some fun activities. Walkers can raise funds to directly benefit the “Cincinnati Comprehensive Sickle Cell Organizer: Cincinnati Comprehensive Sickle Cell Center Contact: Cincinnati Walks for Kids Walk Team, (513) 636-2941 September 30 SICKLE CELL AWARENESS BLOOD DRIVE 7:30 a.m.-2:00 p.m.

Cincinnati Children’s Hospital Medical Center

Location of event: Fifth Third Sabin Auditorium 3333 Burnet Avenue Cincinnati, OH 45229 Audience: Open to the general public. Blood donation eligibility guidelines can be found at www. hoxworth.org/donate_blood/ eligibility.html Cost: $FREE Description: The Cincinnati Comprehensive Sickle Cell Center is proud to host a blood drive with Hoxworth Blood Center, in honor of Sickle Cell Awareness Month.

Every blood type is needed, but donations are especially needed from minority blood donors.

Organizer(s): Cincinnati Comprehensive Sickle Cell Center and Hoxworth Blood Center Contact: Bethany Morris, (513) 803-5355

Sickle Cell Awareness Month Section

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SICKLE CELL PROJECT PROFILE: REGION II-DAYTON

wo has the type of smile that can light up a room. However, because 12-year-old Awo suffers from sickle cell disease, she will live her entire life experiencing intense pain episodes that would make most people lose their smile. But Awo is different. Whether she is acting, singing or playing volleyball, this active pre-teen has a bubbly personality and fun loving attitude that rubs off on everyone she comes into contact with. She has learned to overcome her disease with a positive attitude and alongside her mom is helping to pave the way for better treatment for adult sickle cell patients. It is for these reasons that she has been chosen this year as an ambassador for Dayton Children’s.

For the first seven years of her life, Awo stayed fairly healthy. However, when she was in second grade, her condition worsened and Awo ended up having to stay for a week at Dayton Children’s on a number of occasions due to acute chest syndrome, a serious complication related to sickle cell. By the time Awo was 9 she began taking ownership of her own treatment and learned how to cope with her disease. Awo has learned what medicines she needs to take every day and when she does have pain has learned what she needs to do in order to feel better. If Awo doesn’t experience any complications she only has to come and see Dr. Dole every six months.

Since sickle cell is a lifelong disease, many children become accustomed to the friendly environment that Dayton Chil-

West Central Ohio Comprehensive Sickle Cell Center West Central Ohio Comprehensive Sickle Cell Center Dayton Children’s Medical Center One Children’s Plaza Dayton, OH 45404 (937) 641-3111or 1-800-228-4055 ext. 5014 http://www.childrensdayton.org/cms/dayton_childrens_services/0aa34374b79c9d18/index.html Counties Served: Allen, Auglaize, Champaign, Clark, Darke, Greene, Hancock, Hardin, Logan, Mercer, Miami, Montgomery, Paulding, Preble, Putnam, Shelby and Van Wert

Awo Onwudiwe dren’s offers for their treatment. When they become adults, the transition can oftentimes seem abrupt because many adult physicians are not trained in the protocol for treating and coping with sickle cell. Because of Awo, Mamle Anim (mother) has begun working with Dr. Dole in an attempt to change this.

As a physician and educator at the Wright State School of Medicine, Mamle has begun a clinic with Dr. Dole at Five Rivers Health Centers in Dayton to teach residents about treating adult sickle cell patients. “It has been quite an eye opener for the residents because treating adult sickle cell patients is something that they’ve never really talked about” says

Standard Services: Newborn screening coordination and follow-up Free hemoglobin testing Hemoglobinopathy counseling and education Care coordination and specialty resource referrals Community education and outreach Regional resource clearinghouse of educational materials Sickle Cell Sabbath/Sickle Cell Month activities Sickle Cell Advisory Committee

Mamle. “We hope that as they learn more about sickle cell and work with patients that they will then go on to teach others and in the future more doctors will be trained to work with adults in this setting.”

Thanks to this new clinic, Awo and her mom along with Dr. Dole are helping to pave the way for the future of sickle cell

Expanded Services and Programs: Patient and family disease education School intervention program Patient assistance program Special family events/activities Living Healthy with Sickle Cell Disease Workshops for Adults (part of the Chronic Disease Self-Management Program) Non-grant supported services provided through the Hematology/Oncology Department at Dayton Children’s Medical Center: Diagnostic evaluation, treatment, and management services for patients birth to 22 years of age Consultation and collaboration with adult health care providers Nutrition assessment and counseling Social work services Psychosocial assessment and intervention Transition Clinic at Five Rivers Health Center (725 South Ludlow Street, Dayton, 45402) Training/rotation/internship in hemoglobin disorders Project Director: Cynthia Moon

patients. Mamle hopes by the time Awo is an adult some changes will have been made and she will still receive the type of care she has experienced at Dayton Children’s. However this is still a while down the road and Awo has plenty of time to be a patient at Dayton Children’s. As an ambassador, Awo will share her story and offer hope and inspiration to others.

SICKLE CELL AND HEALTH AWARENESS EVENT LISTINGS August 30 SICKLE CELL AWARENESS BLOOD DONOR DRIVE KICKOFF EVENT 8:00 a.m.-4:00 p.m.

Community Blood Center Main Office 349 South Main Street Dayton, OH 45402 Audience: Target African American blood donors (ages 18 & over).

Blood donation guidelines can be found at http://givingblood.org/ donate-blood/who-can-donate. aspx.

Cost: $FREE Description: Blood drive event to bring awareness to the community about sickle cell disease and the need for minority blood donors. The

West Central Ohio Comprehensive Sickle Cell Center will be onsite to provide information about sickle cell disorders and regional program services, along with the Dayton/ Springfield Sickle Cell Affected Families Association, Inc. Organizer(s): Community Blood Center and West Central Ohio Comprehensive Sickle Cell Center Contact: Tracy Morgan, (937) 461-3254 August 31 SICKLE CELL FAMILY SKATING PARTY 2-5:00 p.m.

Skateworld of Vandalia 333 South Brown School Road Dayton, OH 45377 Audience: Open to patients/ families with sickle cell disease

who receive care at the West Central Ohio Comprehensive Sickle Cell Center Cost: $FREE Registration Deadline: RSVP to Synthia Copher by August 26, 2013 Description: Fun event for patients and families. The West Central Ohio Comprehensive Center will be on-site to provide back-to-school information related to sickle cell disease and patient education (IEP/ Section 504 Plans). All schoolage patients (that RSVP by the registration deadline date) will receive a backpack full of back-toschool supplies.

Organizer: West Central Ohio Comprehensive Sickle Cell Center Contact: Synthia Copher, (937) 641-4334

September 7 5TH ANNUAL SICKLE CELL AWARENESS WALK 9:00 a.m. (Registration) 10:30 a.m. (Walk Begins) Art Van Atta Park 3180 Benchwood Road Dayton, OH 45414 Audience: Individuals/families affected by sickle cell disease, sickle cell trait and the general public Cost: $15.00 per person donation for t-shirt and goodie bag/$10.00 per person donation for teams of five for t-shirt and goodie bag.

Event is FREE for anyone who would just like to walk/run/jog for sickle cell awareness.

Registration Deadline: Early registration at daytonsicklecell@

yahoo.com is suggested. You may also register the day of the event.

Description: Annual run/walk/ jog to raise awareness of sickle cell disease. Event will include health, social service and retail vendors. The West Central Ohio Comprehensive Sickle Cell Center will be onsite to provide information related to sickle cell disorders and regional program services.

Organizer(s): Dayton/Springfield Sickle Cell Affected Families Association, Inc. and West Central Ohio Comprehensive Sickle Cell Center (co-sponsors) Contact: Eva Winton, (937) 6263840 October 12 WOMEN OF WISDOM 2ND ANNUAL TEEN FORUM

2-5:00 p.m.

Dayton Convention Center 22 East Fifth Street Dayton, OH 45402 Audience: Tween and teen young ladies ages 11-17 Cost: $FREE Description: This forum will focus on six (6) principles for young ladies-guidance, responsibility, motivation, education, appearance and self-esteem issues. The West Central Ohio Comprehensive Sickle Cell Center will be onsite to provide information related to sickle cell disorders and regional program services.

Organizer: Women of Wisdom Contact: Gena McDonald, (937) 397-0958 or (937) 361-1WOW

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Sickle Cell Awareness Month Section SICKLE CELL PROJECT PROFILE: REGION III-Toledo Sickle Cell Project of Northwest Ohio Sickle Cell Project of Northwest Ohio 313 Jefferson Avenue (mailing address) Toledo, OH 43604 Cordelia Martin Health Center (location address) 430 Nebraska Avenue Toledo, OH 43604 (419) 255-7883 Ext.110 Region III counties: Defiance, Erie, Fulton, Henry, Huron, Lucas, Ottawa, Sandusky, Seneca, Williams, Wood Standard services available: Newborn screening coordination and follow-up services Hemoglobinopathy counseling Education, outreach and awareness activities Regional resource center for hemoglobinopathy educational materials

Sickle Cell Sabbath/Sickle Cell Month activities Expanded services and programs: Patient/ and family disease education School outreach Genetic counseling (in collaboration with the University of Toledo Division of Genetics) Town Hall Meeting (March 2013) for patient/families with sickle cell disease (in association with the Ohio Sickle Cell and Health Association) Non-grant supported services provided through Cordelia Martin Health Center: Primary and pediatric medical care for uninsured and underinsured populations Social work services On-site pharmacy and laboratory WIC Services Project Director: Kortney Weber

Pictured Left to right: The Juice 107.3 Radio Station Talk Show Host, Skylar Meadows, Dr. Crawford Strunk, Toledo Children’s Hospital, Jordan Jones, Consumer, Kortney Weber, Toledo Project Coordinator and Cheryl Jones, Ohio Department of Health.

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egion III’s Sickle Cell Project of Northwest Ohio is a special project of the Neighborhood Health Association located in Toledo, Ohio. On March 17th 2013, the Sickle Cell Project, in conjunction with the Ohio Sickle Cell and Health Association, the Ohio Department of Health and 107.3 The Juice FM, held the first ever Radio Town Hall meeting on sickle cell. This was the first Town Hall held in the state of Ohio, with the other major cities to follow suit, but not necessarily using the same format. Local Toledo radio personality and community activist Schylar Meadows hosts “Juice Talk” on Sunday mornings, and she did an excellent job leading the discussion with our panel.

That panel included Cheryl Jones –

Sickle Cell Program Coordinator at the Ohio Department of Health, Dr. Crawford Strunk – Board Certified Pediatric Hematologist/Oncologist at Toledo Children’s

Hospital, Kortney Weber – Project Director for the Sickle Cell Project of NW Ohio, and call in panel member Wendy Berry-West Director of the Ohio Sickle Cell and Health Association.

The discussion included an overview of sickle cell disease and sickle cell trait and the genetics behind it, what individuals living with sickle cell deal with on a daily basis in terms of symptoms, current treatment options, Newborn Screening in Ohio, as well as local and state resources.

We had a number of people call in to give personal testimonials regarding their experiences with sickle cell and ask questions. There was so much interest that the phone lines actually got tied up and people couldn’t get through!! 107.3 The Juice

was more than kind to us, allowing us to go well over our planned time because of the level of interest.

All in all this was an excellent experience, and we hope to make it an annual event. It is so important that we not let sickle cell stay on the back burner. People need to be aware that tens of thousands of people are living with this disease and babies are still being born with it, even though it may not be talked about much. On behalf of the Sickle Cell Project of NW Ohio, I would like to send my deepest gratitude to those who helped pull this event together; and to Miss Meadows and The Juice FM for being such gracious hosts. I could not have done it without every single one of you!!

SICKLE CELL AND HEALTH AWARENESS EVENT LISTINGS September 1-31 THE UNIVERSITY OF TOLEDO BLACK STUDENT UNION OUTREACH/EDUCATION 12:00 p.m.-5:00 p.m. (during office hours) The University of Toledo Black Student Union Location of event: Student Union #3523 (3rd Floor) 2801 West Bancroft Toledo, OH 43606 12

Audience: University of Toledo students Cost: $FREE Description: For SeptemberNational Sickle Cell Awareness Month, the Sickle Cell Project of North West (NW) Ohio will have information on sickle cell disorders and regional services available for students at the Black Student Union on the campus of the University of Toledo.

Organizer: Sickle Cell Project of NW Ohio

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Contact: Kortney Weber, (419) 255-7883, ext. 110 September 18 COMMISSION ON MINORITY HEALTH PRESENTATION 9:00 a.m.

EMS Training Center 2127 Jefferson Avenue Toledo, OH 43604 Audience: Representatives from various organizations in the area

that work in the realm of minority health Description: Presentation to the attendees of the monthly meeting of the Commission on Minority Health regarding sickle cell disorders and regional services provided by the Sickle Cell Project of NW Ohio.

Organizer: Toledo-Lucas County Health Department, Toledo Commission on Minority Health, Sickle Cell Project of NW Ohio Contact: Kortney Weber,

(419) 255-7883, ext. 110 September 28 SICKLE CELL FAMILY REUNION PICNIC 1-3:00 p.m.

Ottawa Park-Toledo 2532 Upton Avenue Toledo, OH 43606 Audience: Individuals affected by sickle cell disease and their families in the Region III area Cost: $FREE

Description: The Sickle Cell Project of NW Ohio will host a picnic for affected families in the area for the purpose of support, networking and fellowship. THIS EVENT IS BY INVITATION ONLY. Contact Kortney Weber for invite information.

Organizer: Sickle Cell Project of NW Ohio Contact: Kortney Weber, (419) 255-7883, ext. 110

OSCHA is looking for the next “Ohio Sickle Cell Child Ambassador”

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he Ohio Sickle Cell Child Ambassador Competition (formerly the Ohio Poster Child Contest) is a statewide contest held by Ohio Sickle Cell and Health Association (OSCHA) to identify a Goodwill Ambassador (age 5-10 years of age) for sickle cell disease in Ohio. The contest is held so that Ohio will have a state representative and a candidate for the National Child Ambassador Contest (SCDAA).

The role of the Ohio Sickle Cell Child Ambassador is to serve as a Goodwill Ambassador by: • Making public appearances on behalf of the Ohio Sickle Cell and Health Association • Act as a representative to various public officials including the Governor of Ohio • Being a positive example and role model to others with sickle cell disease

Educating the public through various marketing initiatives to increase awareness and support for the OSCHA mission.

The Child Ambassador will reign for two years beginning the month of September. The official announcement of the winner to the public usually begins at the Annual fundraiser of the organization in September.

The individual chosen will receive the following prizes: •

• • • • • •

Crowned OSCHA Ambassador for two years $100 gift card shopping spree Back to School Care Package (may include: school supplies, book bag, etc.)

OSCHA Photo Shoot Photo opportunity with Governor of Ohio (based on the Governor’s availability) Other gifts and opportunities as they become available

For more information or to obtain an application package call the OSCHA office at 614-228-0157 or go to the website at www.ohiosicklecell.org.

Celebrates September National Sickle Cell Month

Join the Ohio Sickle Cell and Health Association, in its 34th year of business as an advocate organization in the fight against sickle cell disease. Our mission, “To Provide Education, Advocacy and Support Statewide to Individuals and Families Affected and At-Risk for Sickle Cell Disease”.

OSCHA AD

How can you help?

• Join OSCHA as an active member in the fight against sickle cell disease • Participate in events across the state of Ohio during September Sickle Cell Month • Get tested so that you will know your hemoglobin type • Become educated about sickle cell disease • Be an advocate for the thousands of people across the state who are affected by sickle cell disease For more information contact: The Ohio Sickle Cell and Health Association (614) 228-0157 www.ohiosicklecell.org

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Sports Star Santonio Holmes Fights Sickle Cell with Son Santonio “T.J.” Holmes III and his father New York Jets, Santonio Holmes

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ew York Jets wide receiver Santonio Holmes is a football king whose sports record boasts being the first round pick of the 2006 NFL Draft and the MVP of Super Bowl XLIII. But despite his powerhouse status on the field, the sports hero was helpless when his young son, Santonio III, was diagnosed with Sickle Cell Disease (SCD).

SCD warps the shape of red blood cells, making it difficult for blood to circulate. The illness can cause anemia, high blood pressure, and painful damage to key organs including the lungs, kidneys, spleen, and brain.

Holmes stood by his son through challenging and painful experiences brought on

by SCD, including the removal of his spleen in 2010. The spleen is a major part of the body’s immune system; it contains special white blood cells that obliterate bacteria and help the body fight off infection. It also produces red blood cells and filters old cells out of circulation. It’s possible to live without a spleen, but not having one makes the body more open to catching serious infections.

Because of his success as a ball player, Holmes was able to give his son the best medical care available. But he knew other families faced with the disease might not be so fortunate.

Supporting his son during these trials inspired Holmes to help other families affected by the illness. In 2011, he applied the same focus and dedication to stomping out SCD that he leverages each season on the field to found the III & Long Foundation.

Named after Santonio III, the foundation is dedicated to funding research to find a cure for SCD, assisting families affected by SCD by providing financial and emotional support, and promoting public awareness with Bowl-A-Thons and other community events.

“I know how financially expensive and

You can see the results of our sickle cell Super Bowl 43 MVP, Santonio Holmes displays winning Trophy! emotionally taxing the hospital bills and medication for SCD can be,” said Holmes.

“My goal is to help families that cannot afford the proper treatments by providing grants to organizations that assist these families.”

The foundation is also a funnel for other charitable events, including an annual holiday party for the Boys & Girls Club of Belle Glade, Fla., Holmes’s hometown.

Holmes has leveraged his organization to donate Thanksgiving dinners to local Belle Glade families, give computers to the local Boys & Girls Club, and donate football uniforms to his former high school team.

Holmes hosts football camps every summer, has sponsored students’ attendance to the Florida Atlantic University’s five day F.I.N.E.S.S.E. Football Camp, and has traveled to Ghana with the David Clowney Foundation to play football with local kids and engage in service projects.

“As a parent, it’s hard to watch your child go through something like this. I also know how expensive medications and hospital bills can be. My goal is to help affected families through charitable grants,” said Holmes.

research in leading medical journals.

And in Dumeral’s smile.

Nothing makes us happier than helping a child who has a disease like sickle cell manage his condition. Our research programs help us to do this for hundreds of children around Cincinnati and thousands around the world each year.

Sickle cell disease affects 100,000 people in the United States, and nearly half of those suffering are children. As a national leader in caring for children with sickle cell disease, thalassemia and other hemoglobin disorders, researchers in the Hematology and Gene Therapy Program at Cincinnati Children’s are on the brink of a scientific discovery that may one day end the symptoms-and suffering-caused by sickle cell disease.

Our quest to find better treatments for sickle cell and blood diseases is a costly one. And as a not-for-profit hospital and research center, we need your support. Visit our web site and see how you can help us change the outcome.

Dumeral Brown benefits from our comprehensive support and specialized expertise in the research and treatment of sickle cell. www.cincinnatichildrens.org/support

To learn more about the Santonio Holmes III & Long Foundation, visit www.unation.com/ santonioholmes.

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Sickle Cell Awareness Month Section

SICKLE CELL PROJECT PROFILE: REGION IV-COLUMBUS

Peer Mentor Program For Adolescents and Young Adults With Sickle Cell Disease

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ationwide Children’s Hospital Comprehensive Sickle Cell Disease (SCD) and Thalassemia Program has developed a new innovative program designed to meet the specific needs of Adolescents and Young Adults (AYA).

This program links older adolescents with young adults for the purposes mentorship, education and support. Our program goals include teaching young people tools for self-advocacy, SCD education and the identification of coping strategies for living with a chronic illness.

Initially, our focus was to decrease unplanned hospital re-admissions within 30 days. We planned to accomplish this by providing programming and psychosocial support for this group outside of the inpatient setting. While this is still a primary focus of the program we also want equip and empower this group to become selfadvocates through the provision of education and coping strategies for successful disease management.

At the onset of group formation we chose patients with the highest number of hospitalizations for SCD and pain over the previous 12 months. These patients were invited to participate in the new Peer Men-

tor Program for Adolescents and Young Adults with Sickle Cell Disease. The sickle cell hospital staff also invited young adults with SCD who are managing their illness, while working, going to school and/or completing essential daily life activities to become mentors to adolescents and other young adults. An initial overnight retreat was held in June, 2012 to kick off the group’s activities. The retreat was followed by monthly events facilitated by hospital psychosocial staff members who include, a Program Coordinator, Social Worker, Psychologist, and Therapeutic Recreation Specialist.

During the retreat mentors were trained in a one day workshop and had ongoing support from the sickle cell psychosocial staff. Mentors and mentees were also paired and participated in several educational and coping skill(s) building activities, then, instructed to communicate by phone or text at least one time per week until the end of December, 2012. Our hope continues to be that this psychosocial network will help promote staying healthy outside the hospital setting. Group members subjectively report a positive experience and the desire to continue with the

Comprehensive Sickle Cell Disease and Thalassemia Program Nationwide Children’s 700 Children’s Drive Columbus, OH 43205 (614) 722-5948 http://www.nationwidechildrens.org/sickle-celland-thalassemia-program

School/daycare intervention program Patient/family disease education Blood/bone marrow donor education Peer mentor program Nursing education Transition to adult care

Region IV counties: Athens, Belmont, Coshocton, Delaware, Fairfield, Fayette, Franklin, Gallia, Guernsey, Harrison, Hocking, Jackson, Jefferson, Knox, Lawrence, Licking, Madison, Marion, Meigs, Monroe, Morgan, Morrow, Muskingum, Noble, Perry, Pickaway, Pike, Ross, Scioto, Union, Vinton, Washington, Wyandot

Non-grant supported services provided through the Hematology/Oncology/BMT Division at Nationwide Children’s: Infusion services Confirmatory testing for abnormal newborn screening hemoglobin results Comprehensive medical management and follow-up for hemoglobin disease Genetic counseling and extended family testing Case management Dental evaluations Psychological testing and evaluations Apheresis Program Psychological/clinical research trials Student training

Standard services available: Newborn screening coordination and follow-up services Hemoglobinopathy counseling Hemoglobinopathy education , outreach, awareness activities Sickle Cell Sabbath/Sickle Cell Month activities

Project Director: Tanica Jeffries

Expanded services and programs:

project. Currently, we are continuing the group and expanding membership in 2013.

The participants have formed -Educational, Activities and Fundraising Committees. They have also developed a Mission Statement: “Paving the way for others by

educating the community and spreading awareness about Sickle Cell Disease”. We have held our Second Annual Weekend Retreat and members maintain the eventual goal of Mentees graduating to become Mentors.

SICKLE CELL AND HEALTH AWARENESS EVENT LISTINGS September 1-30 UNDERSTANDING SICKLE CELL DISEASE DISPLAY 24 hours per day/7 days a week Nationwide Children’s Location of event: Centennial Wall Main Corridor-Education Building 700 Children’s Drive Columbus, OH 43205 Audience: Open to the general public Cost: $FREE Description: Prominent wall display to promote education and awareness of sickle cell disease during the entire month of September – National Sickle Cell Disease Awareness month.

Organizer: Comprehensive Sickle Cell Disease and Thalassemia Program Contact: Tanica Jeffries, (614) 722-5948 September 6 SICKLE CELL TRAIT, SICKLE CELL

DISEASE AND YOUR PATIENT 12:00-1:00 p.m.

Nationwide Children’s 700 Children’s Drive Columbus, OH 43205 Audience: CareSource nurses from around the state.

Cost: $FREE Registration Deadline: September 4, 2013 Description: Information about sickle cell disease and sickle cell trait provided by Comprehensive Sickle Cell Disease and Thalassemia nurse practitioner and CareSource social worker.

Organizer(s): Comprehensive Sickle Cell Disease and Thalassemia Program and CareSource Contact: Monique Phifer, (800) 488-0134 ext. 4608 September 7 THE FAITH THOMAS FOUNDATION GOLF OUTING, DINNER AND SILENT AUCTION 8:00 a.m.

Winding Hollow 6140 Babbit Road New Albany, OH 43054 Audience: Open to the general public Cost: $50.00 Dinner and Silent Auction only. Contact program organizer for golf course price(s), registration and team formation information. Golf and Dinner/ Silent Auction can be purchased separately.

Registration Deadline: August 23, 2013 Description: Fundraiser to promote sickle cell awareness and benefit the Nationwide Children’s Comprehensive Sickle Cell Disease and Thalassemia Program.

Organizer: Faith Thomas Foundation Contact: Ty Harris, (614) 551-1108 September 20 GIVE LIFE CHALLENGE: BONE MARROW DRIVE 11:00 a.m.-4:00 p.m.

Nationwide Children’s

Location of event: Conference Room 025B 555 South 18th Street Columbus, OH 43205 Audience: Open to the general public Cost: $FREE Description: Donor recruitment drive to educate the public on the need for blood and bone marrow donations to help cure chronic illnesses such as sickle cell disease.

Organizer(s): National Marrow Donor Program, Comprehensive Sickle Cell Disease and Thalassemia Program, Sigma Gamma Rho Sorority, Inc. and the Multi-Cultural Center at the Ohio State University Contact: Marshall Brown, (877) 601-1928, ext. 7753 September 15 ABCs ON SICKLE CELL DISEASE-PEER MENTOR PROGRAM 1-4:00 p.m.

Easton Town Center

Location of event: Community Booth 160 Easton Town Center Columbus, OH 43219 Audience: Open to the general public Cost: $FREE Description: Members of the Nationwide Children’s Peer Mentor Program (adolescents and young adults with sickle cell disease) will be on-site to provide education on sickle cell disease and share their personal stories about living with the disease.

Organizer: Comprehensive Sickle Cell Disease and Thalassemia Program Contact: Tanica Jeffries, (614) 722-5948 September 28 FAMILY EDUCATION DAY During zoo hours 1-3:30 p.m. (Program) Columbus Zoo and Aquarium Location of event: Activity Pavilion 9990 Riverside Drive 4850 West Powell Road Powell, OH 43065

Audience: School-aged children with sickle cell disease (and their families) who receive services at Nationwide Children’s/ Comprehensive Sickle Cell Disease and Thalassemia Program.

Cost: $FREE Registration Deadline: September 7, 2013 Description: At this event, schoolaged children with sickle cell disease and their families will learn by using small animals, valuable information about the genetics of sickle cell disease and other red blood cell disorders during a presentation by the program’s Medical Director and an animal demonstration by zoo staff.

Organizer: Comprehensive Sickle Cell Disease and Thalassemia Program Contact: Tanica Jeffries, (614) 722-5948

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Sickle Cell Awareness Month Section SICKLE CELL PROJECT PROFILE: REGION V-CLEVELAND American Sickle Cell Anemia Association American Sickle Cell Anemia Association 10900 Carnegie Avenue Suite DD 1-201 Cleveland, OH 44106 (216) 229-8600 http://www.ascaa.org

Expanded services and programs: Hispanic community direct services and outreach Global/international education and referral initiative School/home intervention program Supportive services/crisis intervention/community referrals Collaborative relationships with Region V hospitals CBS Cares public service announcement for sickle cell disease (local and national airing) Website (in over 70 pull down languages) Facebook and Twitter

Region V counties: Cuyahoga, Geauga, Lake, Lorain, Medina Standard services: Newborn screening follow-up and diagnostic testing Hemoglobinopathy counseling and education (additional on-site counseling locations at the Cleveland Clinic, Metro Health Hospital, McCafferty Health Center, J. Glenn Health Center, Miles/ Broadway Health Center, Lorain City Health Center, Lake County Health Department and Medina County Health Department) Resource center for hemoglobinopathy education materials Sickle Cell Sabbath/Sickle Cell Month (September) activities

Non-grant supported services provided through the American Sickle Cell Anemia Association: On-site diagnostic hemoglobin testing (in association with the Cleveland Clinic) Summer residential camp for youth with sickle cell disease (one-week) Choosing Health Awareness, Mobility, Personal Power and Success (CHAMPPS) Youth Transition Program Cleveland Clinic resident physician rotation program Project Director: Ira Bragg-Grant

SICKLE CELL AND HEALTH AWARENESS EVENT LISTINGS Every Wednesday SICKLE CELL EDUCATION AND TESTING 8-11:30 a.m.

John Glenn Smith Health Center Location of event: Immunization Clinic (1st Floor) 11100 St. Clair Avenue Cleveland, OH 44108 1-3:30 p.m.

Miles-Broadway Health Center Location of event: Immunization Clinic (1st Floor) 9127 Miles Road Cleveland, OH 44104 Audience: Families and individuals at-risk for sickle cell disease, sickle cell trait and other hemoglobinopathies.

Cost: $FREE Description: Education and FREE sickle cell testing provided by the American Sickle Cell Anemia Association. Appointments are preferred.

Organizer: American Sickle Cell Anemia Association Contact: Leslie Carter (216) 229-8600 18

Every Thursday SICKLE CELL EDUCATION AND TESTING 1-4:30 p.m.

Thomas F. McCafferty Health Center Location of event: Reproductive Clinic 4242 Lorain Avenue Cleveland. OH 44113 Audience: Families and individuals at-risk for sickle cell disease, sickle cell trait and other hemoglobinopathies.

Cost: $FREE Description: Sickle cell and hemoglobin variant education and FREE sickle cell testing provided by the American Sickle Cell Anemia Association.

Organizers: American Sickle Cell Anemia Association Contact: Gil Pena (216) 229-8600 September 7 “SCHOOL DAZE� BACK TO SCHOOL RESOURCE PROGRAM 2-4:00 p.m.

September 2013 | praisereporter.com | (888) 978-3790 |

Cleveland Heights-University Heights Public Library 2345 Lee Road Cleveland, OH 44118 Audience: School-age students with sickle cell disease, parents, family and friends Cost: $FREE Description: This event will provide presentations on the Child Accident Prevention Program, school IEPs and 504 planning and transitioning from adolescence to teenage years. A nutritional demonstration will be available.

Parents will have the opportunity to share their planning and school experiences. The program will also offer students networking opportunities and school resources.

Organizer: American Sickle Cell Anemia Association Contact: Leslie Carter (216) 229-8600 September 14 2ND ANNUAL FAMILY HEALTH AND WELLNESS FESTIVAL 10-2 p.m.

John Glenn Smith Health Center 11100 St. Clair Avenue

Cleveland, OH 44106 Audience: Open to the public Cost: $FREE Description: Sickle cell and hemoglobin variant education and FREE sickle cell testing provided by the American Sickle Cell Anemia Association.

Organizer: Cleveland Department of Public Health Contact: Gilberto Pena American Sickle Cell Anemia Association (216) 229-8600 September 14 SOCIAL ACTION MINISTRY ANNUAL HEALTH FAIR 11 a.m.-3 p.m.

Open Door Missionary Baptist Church Location of event: Mitchell HallLower Auditorium of the church 8215 Woodland Avenue Cleveland, OH 44104 Audience: Parishioners and neighborhood community Cost: $FREE Description: Annual health fair

hosted by the Open Door Ministry Baptist Church. The American Sickle Cell Anemia Association will be onsite to provide sickle cell and hemoglobin variant education and FREE testing.

Organizer: Open Door Missionary Baptist Church Contact: Terri Merriweather (216) 347-0315 October 3 CLEVELAND JOB CORPS WELLNESS CENTER HEALTH FAIR 9:00 a.m.-1:00 p.m.

Cleveland Job Corps 13421 Coit Road Cleveland, OH 44110 Audience: Students, staff, faculty and community members Cost: $FREE Description: This objective of the health fair is to provide practical information and resources on prevention, early detection, nutrition and other health issues that can impact daily lives. The American Sickle Cell Anemia Association will be onsite to provide FREE testing

and education on sickle cell and hemoglobin variants.

Organizer: Cleveland Job Corp Contact: Fran Willis (216) 541-7798 or 216-541-7785 October 8 LAKE COUNTY HEAD START TESTING 9:00 a.m.-2:00 p.m.

Lake-Geauga United Head Start, Inc. 32114 Vine Street Willowick, OH 44095 Audience: Lake County community and Head Start students Cost: $FREE Description: Scheduled sickle cell testing (required) for students enrolled in the Lake-Geauga United Head Start Program. Parental testing consent form must be completed in advance prior to testing. Contact Leslie Carter at the American Sickle Cell Anemia Association for more information.

Organizer(s): Lake -Geauga United Head Start and the American Sickle Cell Anemia Association Contact: Leslie Carter (216) 229-8600

Sickle Cell Awareness Month Section SICKLE CELL PROJECT PROFILE: REGION VI-AKRON

Mychal Clayton Memorial Sickle Cell Awareness Walk On Saturday, September 21, 2013.

The Mychal Clayton Memorial Sickle Cell Awareness Walk will begin at Akron Lock 3, 200 S. Main Street in Akron, Ohio. Registration will begin at 8 a.m. and the Walk begins at 10 a.m. Biker Riders are also invited to participate and should plan to arrive by 9 a.m.

The walk was named after a wonderful young man who died of Sickle Cell Disease, Mychal Clayton at the young age of 18. Mychal’s devoted mother, Toka Clayton, was proud of all of his accomplishments and was his cheerleader, confidante and best friend. Mychal was a patient at Children’s Hospital in Akron, where he was a familiar presence for many years and was nominated by the hospital and chosen by the Ohio Sickle Cell and Health Association to serve as the Ohio Sickle Cell Poster Child at the age of 10.

Just before his senior year, Mychal was hospitalized twice with congestive heart failure and desperately needed a doublelung transplant. Even so, Mychal, never used his condition as an excuse to be angry at the world or not to do what he should.

Mychal’s plan, and he always had one, was to attend the University of Toledo for two years then transfer to Hampton University to pursue air traffic control studies. “Eventually, he wanted to become a pilot,” his mother said. That was to happen after he got his lungs and became healthier. Unfortunately, Mychal lost his battle with Sickle Cell Disease before he saw his dreams come true.

Family friend, Charles Small spoke

Ohio Region VI Sickle Cell Program One Perkins Square Akron, OH 44306 (330) 543-3521 (800) 262-0333, Ext. 8730 https://www.akronchildrens.org/cms/sickle_ cell_program/index.html Ashland, Ashtabula, Carroll, Columbiana, Crawford, Holmes, Portage, Mahoning, Richland, Stark, Summit, Trumbull, Tuscarawas, Wayne Standard services: Newborn screening coordination and follow-up Patient and family advocacy Hemoglobinopathy counseling and patient/family education Resource center for audiovisual and print materials regarding hemoglobinopathies Physician communication on newborn screening and follow-up standards and practices Hemoglobinopathy education, outreach and awareness activities for health care professionals/ providers, consumers and the public Coordinating organization for regional (1) Sickle Cell Sabbath/Sunday activities and (2) September Sickle Cell Awareness Month Expanded services and programs: School intervention services Quarterly newsletter Patient/family disease education Adolescent transition program

Mychal Clayton

about Mychal’s eye-on-the-prize pursuits: “He had only lived 18 years but he lived a life that was an inspiration to people many years his senior … He had a demeanor that made you feel good even while he was un-

Holiday events for patients and their families Monthly parent/patient support group meetings Support services, including personal, financial, career/vocational counseling and group activities Psychosocial assessments/interventions and supportive services Annual sickle cell awareness walk Annual weekend summer camp, Camp Ed Bear (Children’s Hematology-Oncology Patients and Staff), for patients age 6-16 and Counselor in Training (CIT) Program for patients age 16-21 Non-grant supported services provided through the Showers Family Center for Childhood Cancer and Blood Disorders at Akron Children’s Hospital: Specialized medical care for pediatric and adolescent patients affected with sickle cell disease Monthly comprehensive clinics for sickle cell disease patients (with incorporated genetic, psychosocial counseling, nutrition, physical therapy and radiology services) Confirmatory testing for abnormal newborn screening hemoglobin results Individual hematological consultation and diagnostic testing Computers available for patients and families to perform sickle cell related information searches Comprehensive Pain Clinic Project Director: LaTonya Lewis

dergoing painful events in his own life.

Sickle Cell Disease sufferers have abnormal, sickle-shaped red blood cells, which circulate poorly through the body, causing excruciating pain, infections, visual impairments, bone damage and delayed growth. The inherited disease affects primarily African-Americans like Mychal, but can happen to others as well.

Toka Clayton — always at war with sickle cell but at peace with the journey — organized the 4.7-mile Mychal Clayton

Sickle Cell Awareness Walk, which is in its 10th year. Her goal is to fund scholarships and grants to help young sickle cell patients pursue activities they enjoy. “Just anything to help boost the kid’s morale,” said Toka Clayton. “They go through a lot. They’re always at the hospital. It’s never-ending,” continued Clayton.

For more information on the Mychal Clayton Sickle Cell Awareness Walk please call LaTonya Lewis at 330-5433521.

SICKLE CELL AND HEALTH AWARENESS EVENT LISTINGS August 31, 2013 1st AFRICAN AMERICAN MALE WELLNESS WALK (YOUNGSTOWN/WARREN) 7:30 a.m. (Health Screenings) 9:30 a.m. (Walk/Run Begins) Holy Trinity Missionary Church 505 Parkcliffe Avenue Youngstown, Ohio 44511 Audience: Open to the general public with particular emphasis on

African American men Cost: $FREE Description: This 5-mile walk/run is to raise awareness among black men that a visit to the doctor is the key to better health. The event will feature FREE health screenings (pre-registration required), kids’ activities and more. The Ohio Region VI Sickle Cell Program will on onsite to distribute information about sickle cell disorders and regional program services.

Organizer: National Center for Urban Solutions Contact: Felicia Alexander (330) 745-3333 September 21 10TH ANNUAL MYCHAL CLAYTON MEMORIAL SICKLE CELL AWARENESS WALK AND MOTORCYCLE RIDE 8 a.m. (Registration) 9 a.m. (Opening Ceremony)

10 a.m. (Walk and Motorcycle Ride Begins) Lock 3 Park (Downtown Akron) 200 South Main Street Akron, OH 44308 Audience: Individuals/families affected by sickle cell disease and the general public Cost: $10early registration/$15 registration after September 6 for walkers, $10 motorcycle riders,

$15 for motorcycle riders with passengers (costs also depend on t-shirt size when ordered) Registration Deadline: Deadline for early registration is Sept.

6, 2013. Early registration guarantees the participant a walk T-shirt. Late registration (after Sept. 6, 2013) does not guarantee the participant a walk T-shirt.

Description: This is a walk along the Lock 3 trail and a motorcycle ride through each side of town

to raise awareness about sickle cell disease. The Ohio Region VI Sickle Cell Program will on onsite to distribute information about sickle cell disorders and regional program services.

Organizers: Ohio Region VI Sickle Cell Program at Akron Children’s Hospital and Toka Clayton Contact: LaTonya Lewis Ohio Region VI Sickle Cell Program (330) 543-3521

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Empowerment Scholarships

Sickle Cell Sabbath

Thank You! The Ohio Regional Sickle Cell Projects would like to THANK the following Ohio faith-based groups and organizations who participated in the 2012 “Sickle Cell Sabbath” Awareness Campaign AKRON, OHIO Akron Children’s Hospital Antioch Baptist Church Christ Way Ministries Community Friends Church Cornerstone Church First Apostolic Faith Church Good Shepherd Baptist Church James Thomas United Methodist Church Jerusalem Missionary Baptist Church Macedonia Baptist Church Mountain of the Lord Church Providence Baptist Church United Baptist Church Unity Holiness Ministries COGIC BARBERTON, OHIO Livingstone Baptist CAMPBELL, OHIO Greater Liberty Baptist Church CANTON, OHIO Antioch Baptist Church Eternal Light Church St James S. Thomas United Methodist Church CINCINNATI, OHIO Berea Seventh Day Adventist Bright Star Baptist Church Calvary Baptist Church Cincinnati Children’s Hospital Cincinnati Clifton Seventh Day Adventist First Baptist Church West College Hill Greater Liberty Baptist Church Greater New Hope Missionary Baptist Church Greater St. John

New Jerusalem Baptist Church St. Joseph Catholic Church St. Simon’s Episcopal Tried Stone Baptist Church CLEVELAND, OHIO East Mount Zion Baptist Church Lifeline Program Fidelity Baptist Church Hope Baptist Temple Progressive Baptist Church Mt. Gillion Baptist Church & Women’s Ministry St. Andrews Episcopal Church COLUMBUS, OHIO Central Ohio American Red Cross Mt. Vernon Avenue Baptist Church Nationwide Children’s Hospital New Birth Christian Ministries Redeemed Christ Church of God Faith Ministries DAYTON, OHIO Agape Bible Fellowship Bethsaida M.B. Church Church of God Saints of Christ College Hill Presbyterian Freedom Hill MB Church Greater New Philadelphia MB Living Word of Faith Macedonia MB Church Mt. Calvary MB New Life Baptist Church Phillip Temple Revival Center Ministries Selah Ministries St. Luke MB Church St. Timothy MB Church Triumphant Ministries

HOMEWORTH, OHIO Mt. Pleasant Baptist Church KENT, OHIO Union Baptist Church MANSFIELD, OHIO Mt. Calvary Baptist Church Mt. Herman Missionary Baptist Church Shiloh Full Gospel Baptist MASSILLON, OHIO St. James AME Zion Church TOLEDO, OHIO Blessed Hope Baptist Temple Neighborhood Health Assoication/Cordelia Martin Health Center Friendship Baptist Church Mt. Zion Baptist Church Third Baptist Church of Toledo TWINSBURG, OHIO Destiny Church WARREN, OHIO Eastside Church of Christ Friendship Baptist Church Grace AME Lordstown Lutheran Church WAYNESBURG, OHIO Macedonia Baptist Church YOUNGTOWN, OHIO Antioch Baptist Church Berean Fellowship Church Butler Memorial Presbyterian Christian Revival and Discipleship Center New Bethel Baptist Church Tabernacle Baptist Church

We invite all faith-based groups and organizations in Ohio to participate in the 2013 “Sickle Cell Sabbath” Awareness Campaign.

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Congratulations to 2012 Winners

he Empowerment Scholarship Fund (ESF) is a grant funded scholarship sponsored by the Ohio Sickle Cell and Health Association(OSCHA), which provides funds to consumers with the purpose of making a long term investment in the future direction of individuals affected with sickle cell disease in Ohio. Winners of the scholarship receive financial support to attend any local, state or national conference of their choice. In return, each recipient must agree to serve as a volunteer of OSCHA as well as to use the information they gain from the event to benefit their self, their family and the larger sickle cell community.

The 2012 winners were both from the southern portion of Ohio. Ms. Eva Winton¸ President of the Dayton Sickle Cell Affected Families Assn. and mother of an adult with sickle cell disease; and Dorothy Baynes mother of a child with sickle cell disease from the Cincinnati Comprehensive Sickle Cell Center were the recipients of the 2012 Empowerment Scholarships. These ladies who represent both the adult and pediatric experience of the sickle cell phenomena, attended the 2012 Sickle Cell Disease Association of America, Inc. National Convention. The 2012

convention was held in Baltimore, Maryland. Recipients experienced opportunities for networking and learned through various workshops more about the sickle cell experience, patient advocacy, current research and other initiatives of this chronic public health issue. They also enjoyed good food and an awesome gala to support the work of SCDAA, Inc. Each participant returned home energized and ready to expand and advance the work of sickle cell disease in their local area. We can say that they will pay it forward!

How Can You Qualify?

• Must be an individuals with Sickle Cell Disease (SCD) 18 years of age or older • Can be a Parent/Legal Guardian/ Caregiver or Spouse of an Individual with SCD • Must be a member of a local Affected Family Association or client/patient of an Ohio Regional Sickle Cell Project Applications are available by July 1 through the local Ohio Regional Sickle Cell Projects and the local Ohio Affected Family Association groups. The application can also be accessed online at www. ohiosicklecell.org. Deadline for submission is 90 days prior to the requested event.

Ohio Conference NAACP Announces 3rd Annual Champions of Diversity Awards

Columbus, Ohio – The Ohio Conference NAACP announced today that the 3rd Annual Champions of Diversity Awards Luncheon will be held Wednesday, September 25, 2013 at the Aladdin Shrine Event & Conference Center. The featured keynote speaker will be National NAACP President, Benjamin Jealous.

“This year we are proud to present Diversity Pioneer Awards to Columbus City Mayor Michael Coleman and Attorney Joseph L. Mas, Chairman, Franklin County Children Services and The Ohio Hispanic Coalition,” said President, Sybil EdwardsMcNabb, Ohio Conference NAACP. “We will also present the Amos H. Lynch, Sr., Legend Award to the Late Judge Robert M. Duncan,” continued Edwards-McNabb.

During the Awards Luncheon several

Ohio companies will also receive Awards for their Outstanding Achievements in Diversity Leadership, Development, Supplier, Workforce, and Community Outreach.

Champions of Diversity will also host on Business Expo and Career Fair on Thursday, September 26, 2013 from 10 a.m. to 4 p.m.

Event Sponsors include the Ohio Department of Jobs & Family Services Ohio Means Jobs, The Ohio State University, The Puffin Foundation West, Walmart, Honda, MORPC and The Columbus Kappa Foundation.

For more information on the Champions of Diversity Awards, Business Expo and Career Fair or to reserve Tables and Tickets contact Spencer 4Higher Media at 614-348-2667.

Ohio Teachers Face New Challenges This School Year

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he most-used punctuation among Ohio educators preparing for the new school year is probably the question mark.

A number of changes for schools will begin playing out as classes resume this month, and their full impact isn’t known.

A recent overhaul of the way the state funds schools has some officials uncertain of exact dollar amounts. Some schools have also complained about what they see as continued inequities. In addition, an end to a state property tax rollback is expected to make passing school levies even tougher.

Proponents say the changes will better prepare students and make schools operate more efficiently and educators more accountable. Republican Gov. John Kasich and the GOP-controlled legislature have also taken steps to add funding and expand vouchers for private and charter schools, which backers say gives parents more choices about their children’s education.

There are new early elementary reading mandates, curriculum standards, teacher evaluations and changes in the way schools will be rated.

“The upcoming school year will bring many changes for both teachers and their students,” said Michele Prater, spokeswoman for the Ohio Education Associa-

tion representing school teachers and other employees. “Changes in policies ... present many unknowns for teachers, leaving them feeling apprehensive about how these reforms will affect their students, their careers and their profession.”

Kasich pushed for the new Third Grade Reading Guarantee to require students to be proficient before leaving third grade, saying there’s a strong correlation between early reading skills and future learning ability. However, some critics said the mandate was rushed through, and the Legislature had to revisit it with a bill temporarily expanding teacher eligibility to head off an anticipated shortage of educators.

Schools in Ohio and many other states are implementing Common Core curriculum standards aimed at focusing classes on preparing students for college and their careers. Ohio is also linking teacher evaluations to student test results and beginning to phase in a new school performance rating system. Instead of grades such as “excellent” and “continuous improvement,” A-F letter grades will be used on school report cards in coming years, with components such as graduation rates, closing performance gaps and achievement.

“We can figure out where we’re strong and where we’re weak, and then get about fixing it,” Kasich said this year during his

State of the State address.

Kasich’s long-anticipated overhaul of Ohio’s troubled school-funding formula underwent changes after going to legislators, and school administrators say they probably won’t know their exact dollar amounts until weeks after classes begin.

“We’re still uncertain about the school funding,” said Tom Perkins, superintendent of Northern Local Schools east of the Columbus area. He’s also president of the Coalition of Rural and Appalachian Schools, a group critical of the new funding plan. It says dozens of schools in lowincome districts get no additional money, while some wealthy districts gain dollars.

Perkins said his district’s costs continue to rise, resulting in staff cuts even as it has excelled academically. He said the schools are prepared for the new mandates and rating changes but waiting to see how they unfold in detail.

“We’ve performed pretty well,” Perkins said. “But I still have questions about the matrix (that will be used).”

State funding for K-12 education has increased in the new budget by some 4 percent, with most schools getting more money. State education officials have emphasized that no district will get less money for this school year.

Ohio has also added new potential sources for funds for special needs and

competitive grants for innovation through the Straight A Fund.

However, schools and union officials say the funding increase doesn’t offset earlier state cuts, the end of federal stimulus help, and reduced property tax revenues at a time when it’s becoming increasingly difficult to get voters to go for school levies.

“On the funding question itself, schools in general were pleased they didn’t lose money,” said Damon Asbury, legislative director for the Ohio School Boards Association. “There are some equity issues, particularly with the low-wealth districts.”

Those districts and some suburban and urban districts that have already seen voters reject repeated levy requests now lose 12.5 percent in state subsidies for future levies.

“We think this will make it more difficult to pass levies,” Asbury said. “People are already looking at this as a tough time .... on average, it takes two or three ballot attempts.”

Changes even extend to the schools’ athletic fields. Legislators approved a measure to facilitate home-schooled students’ participation on public school teams, though some school officials have voiced questions about eligibility rules and liability issues.

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TOP 10 GOSPEL Every Praise

Gospel Music & Entertainment

Hezekiah Walker

Break Every Chain Tasha Cobbs Grace

If He Did It Before ...

Same God Tye Tribbett

God Will Make A Way Shirley Caesar

Clean This House Isaac Carree

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Here In Our Praise

7

Testimony

8

The Gift

9

A Little More Jesus

ezekiah Walker’s “Every Praise” ha become an anthem in Gospel music. Today the song has landed in the #1 spot on the R&R Gospel chart and, after debuting #1 seven weeks ago, his album - AZUSA THE NEXT GENERATION - is also #1 on Billboard’s Gospel sales chart.

“The airwaves are saturated with powerful music right now, and it feels great that ‘Every Praise’ has cut through to the top of the charts,” says B. Jeffrey Grant Clark, Vice President of Radio Promotions for RCA Inspiration. “’Every Praise’ is another Hezekiah Walker song that will be sung throughout the ages - it continues his outstanding legacy of creating timeless church music.”

Donald Lawrence, who produced “Every Praise,” says the song “sonically and stylistically ushers in and validates a potential new genre - ‘Christian Soul.’

“It was an honor to once again produce

Fred Hammond-United Tenors

Anthony Brown & group therAPy

Donald Lawrence

Erica Campbell

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Hezekiah Walker’s Every Praise #1 At Gospel Radio!

It’s Not Over (When God Is In It) Israel & New Breed Featuring James

September 2013 | praisereporter.com | (888) 978-3790 |

Hezekiah Walker

great music with Hezekiah Walker and tread new water by developing a new sound for choirs and choir music,” says Lawrence.

Hezekiah Walker says that “Every Praise” is a universally relatable song.

“Whether they go to church or not, people have a praise in them that is reserved for God,” says Walker. “This song connects with a feeling of thanksgiving and honor that everyone has at some point.”

“The driving force for me is keeping choir music relevant,” says Walker.

“Back in he day when I came along there were a lot of choirs, but you could tell the difference between a Ricky Dillard, a Donald Lawrence, a John P. Kee and a Hezekiah Walker because we all had our certain sound. That’s what kept us in the game, and I’m constantly keeping a focus on delivering a unique sound,” he says.

Hezekiah Walker’s Every Praise #1 At Gospel Radio!

Gospel Music & Entertainment

Clarence McClendon, Deitrick Haddon Among Cast for “Pastors of L.A.” Show to Premiere Fall 2013 on Oxygen

Bishop Noel Jones

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xygen Media has teamed up with Lemuel Plummer, the creator and executive producer of “Vindicated” and producer of “The Sheards,” and Holly Carter, creator and executive producer of “106 & Gospel” and executive producer of “The Sheards,” for the network’s latest series greenlight, “Pastors of L.A.” (working title), an authentic new docu-series set to premiere in the fall of 2013. “Pastors of L.A.” will give viewers a candid and revealing look at six boldly different and world renowned mega-pastors in Southern California, who are willing to share diverse aspects of their lives, from their work in the COMMUNITY and with their parishioners to the very large and sometimes provocative lives they lead away from the pulpit.

‘Pastors of L.A.’ documents these larger than life characters who are rock stars in their communities, with a fresh, unique perspective that will resonate with our young audience,” said Rod Aissa, Senior Vice President of Original Programming and Development, Oxygen Media. “By teaming up with Lemuel and Holly who are some of the best creative minds in the business and heavily respected within this COMMUNITY, we can deliver this authentic series with integrity, while also staying right on brand with Oxygen.”

“We are delighted to work with Oxygen to develop this groundbreaking series

Deitrick Haddon

Bishop Clarence McClendon

Pastor Wayne Chaney

on the extraordinary lives of some of the most prominent pastors in America,” said Lemuel Plummer. “I come to this project with a respect and understanding of their world, having grown up as the son of a pastor and religious broadcasters. We intend to portray the human side of these pastors and the real world in which they live and work.”

“This show documents a journey of transparency from one man to the next as they endeavor to lead others to their own truth and self-discovery,” adds Holly Carter who holds a doctorate of divinity with an emphasis on marketplace ministry and is the daughter of a pastor and an industry veteran in faith and inspirational development and programming. “It’s a dose of reality and a pound of redemption coming from a creative team reared in the church.”

is headed towards retirement and looking for a successor who he can entrust his life’s work. But finding the right man is harder than it sounds.

only for the down and out but for the up and out. His ministry spans from skid row to the estates of Bel Air. When challenged about what many have called his prosperity Gospel, Bishop replies, “there is no other kind of Gospel.”

MEET THE CAST OF “PASTORS OF L.A.”: Bishop Noel Jones (@BishopNoelJones) A Jamaican born into poverty, Bishop Noel Jones has made his way to the other extreme, now living on a hilltop with a view of the Pacific Ocean, Malibu at his feet, and across the street from the former home of the late L.A. Lakers owner, Jerry Buss. The pastor of a church full of celebrities, and the brother of Grace Jones, Bishop Jones

Deitrick Haddon (@DeitrickHaddon) The son of a bishop and an evangelist, Deitrick was preaching at the age of eleven and conducting the church choir at thirteen.

At twenty-three he married the woman he was expected to marry – the lead soprano of the church choir. However, everything didn’t continue as perfectly as the church had hoped. Deitrick and his wife got a divorce and the members of the church shunned him. Aside from the call on his life, the one thing that helped him from hitting rock bottom was his music. A dynamic personality, singer, songwriter, and preacher, Deitrick finds himself at animpasse in life.

Which road will he choose?

Bishop Clarence McClendon (@BishopMcClendon)

Pastor Wayne Chaney At the age of twenty he got the call from God and has grown to become a prominent pastor of the church his grandfather built.

Fast-forward 10 years later, Antioch is the leading church in its COMMUNITY. With an ability to communicate complex truths in a simple way, Pastor Chaney has helped remarkably grow the church, along with the help of his secret weapon, his wife, gospel artist Myeshia Chaney. While Antioch is poised to become the next mega-church with the ability to reach millions worldwide, there’s an obstacle in the way and it comes from within Pastor Wayne’s own family.

Bishop Ron Gibson

Bishop Clarence McClendon appears throughout the world on his weekly international broadcast, which is available in 250 million homes worldwide. This charismatic and ubiquitous bishop has been noted for his contemporary and relevant approach to the Gospel. He believes the Gospel is not

Born in Compton, addicted to drugs before he was a teenager, a leader of the Crips by the time he was sixteen, See pastors, Page 27

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Eats & Treats Create Memorable Meals the Hawaiian Way (Family Features) The longer, sunny days of summer offer the perfect opportunity to get together with friends and family for flavorful meals from the grill.

To host a get-together the Hawaiian way – where all of your friends, family and neighbors feel special – focus on a few well-chosen elements to make even the most spontaneous gathering seem like a carefully orchestrated event.

Start with the buns The most experienced grill chefs know selecting the right bun is just as important as what goes inside. King’s Hawaiian, the family-owned company known for its original Hawaiian sweet bread products, offers a lineup of Hamburger Buns, Sandwich Buns and Rolls to please burger-loyalists and slider-connoisseurs alike.

Serve-up scrumptious fillings Once you have a great bun, there are endless ways to fill them. Try a light, fluffy and sweet bread to complement savory grilled burgers. Soft and sweet dinner rolls make the perfect pick for sliders. These small buns are great for grilled mini burgers or for something more exotic, such as this recipe for Hawaiian-style Aloha Chicken Sliders. For an added

touch, quickly toast the hamburger buns and rolls on the grill for just a few seconds to create an irresistible combination of crispiness and sweetness. For other great summertime recipes, visit www.

KingsHawaiian.com/recipes.

Provide delicious drinks and appetizers While you’re tending to the grill, keep your hungry guests happy with appetizers and beverages. Serve a classic spinach dip in a hollowed out sweet round bread. Treat them to tropical beverages like the ever-popular Mai Tai or the specialty of the islands, POG, made from passion fruit, orange, and guava juices.

Aloha Chicken Sliders Yield: 12 servings, 1 slider per serving 1 can crushed pineapple 1/4 cup soy sauce 1 clove garlic, minced 1 inch piece ginger, peeled and minced 1 teaspoon sesame oil 3 chicken breasts 2 tablespoon crushed pineapple 1/2 cup mayonnaise 1 teaspoon rice wine vinegar

3 slices provolone cheese, cut into

4 pieces 12 tomato slices Lettuce

King’s Hawaiian Original Hawaiian Sweet Dinner Rolls Open pineapple can and reserve two tablespoons for mayo.

Place pineapple, soy sauce, garlic, ginger and sesame oil in zip-top bag and mix well.

For sliders, slice each breast into four pieces and place into bag. Remove

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air from bag, seal and place in fridge for 6-8 hours. In small bowl, stir together two tablespoons pineapple, mayonnaise and vinegar.

Heat grill to high. Grill sliders for four minutes on each side. Top with cheese.

Cut rolls in half. Spread bottom of roll with pineapple mayonnaise; add tomato slice, lettuce, chicken and the top of roll.

Photo courtesy of Getty Images

Money Matters

3 Tips to Help Get Your Financial House in Order

Tax season is over, school has strated, and summer has ended and fall will be upon us before you know it.. If you’re worried that finances won’t let you enjoy the rest of your year to the fullest, why not take a few days to get your financial house in order?

1. Retire your debt Want to earn 18% to 30% a year on your money? You can, and not by investing in some skeevy house-flipping scheme. You can do it by paying down your high-interest consumer debt.

Your return on paying off a credit card is roughly the same as its interest rate – which, these days, can range from 9% to 30%, depending on the card you have and your repayment habits. The average credit card with a variable rate – which is virtually all of them – carries a 15.24% rate, says Bankrate.com. Given that banks pay less than 2% interest on deposits, you can understand why your bank says it values the relationship it has with you.

The monthly payment on a $5,000 credit card balance with an 18% interest rate is about $125, assuming your bank required you to pay 1% of principal and all your monthly interest.Pay the minimum monthly payment, which falls slightly each month as you reduce the balance, and you’ll be debt-free in a bit under 23 years and pay about $7,000 in interest.

If you happen to have $5,000 in savings, your best bet is to use it to pay off your credit card debt.

If you don’t have $5,000 in savings, avoid paying only the minimum monthly.

One strategy: Make your current monthly payment a fixed payment. In this example, you’ll pay $125 a month instead of your required minimum every month. By doing so, you’ll be paying off a bit more principal each month. You’ll be debt-free in about five years and pay $2,700 in interest. Add $75 a month to your payment, to $200, and you’ll be free of payments in 32 months, giving yourself a $200-amonth raise.

Anything you can do to lower your rate in the meantime will help you pay down your debt faster. Switching to a card with a lower rate, of course, will help, provided you don’t pay higher annual fees. So will making your payments

most likely, still result in a higher monthly payment. If you’re nearing retirement, a paid-off home is an excellent thing to have.

promptly. Credit card companies are swift to punish late payments, and slow to forgive. One late payment could cost you a one-time charge, as well as a steep boost in your interest rate – to as much as 30%.

One other problem: “All too often, going forward, people run up the credit card debt all over again,” says Greg McBride, senior analyst at Bankrate.com.

If you feel you have a real problem with getting your credit-card bills in order, call the National Foundation for Credit Counseling at 800-388-2227. They will help you find a non-profit credit counseling agency.

2. Refinance your mortgage Some events happen once in a lifetime. In 1982, 30-year mortgage rates soared to more than 15.2%. Today, the average 30-year rate is 3.81% -- up a bit in the past few weeks, but still historically low.

If you haven’t refinanced your mortgage, consider doing so now. Inflation has averaged 3% since 1926, meaning that your real, inflation-adjusted rate, before any income tax deductions, would be less

than 1% a year. You probably won’t see rates this low again.

Consider a $100,000 mortgage at 6.05%, the average rate for a new home five years ago. Your principal and interest payments would be about $600. At 3.81%, your principal and interest payments would fall to $465, a $135 monthly savings.

Is it harder to refinance than it was in 2006, when all you had to do was prove you had a pulse? Yes. But the difficulty in getting refinanced has been highly overstated, says Bankrate.com’s McBride. “If you have good credit, proof of income, equity in the home or a loan that’s eligible for HARP (Home Affordable Refinance Program), you’re in the game,” he says. What’s good credit? A FICO score of 680 or more. The median FICO score – half higher, half lower – is 700.

MONEY QUICK TIPS: Brace yourself for the refinancing process What about refinancing from a 30year loan to a 15-year loan? The average rate on a 15-year is 2.98%, according to Freddie Mac. Reducing the term will,

3. Recharge your savings You can study modern portfolio theory, read everything Warren Buffett has ever written, and stare at a stock ticker until you see nothing but little green flashing lights. But the biggest factor in how much you have in your retirement account is how much you put in.

People like to think that with a little bit of investment savvy, they can boost the returns on their savings to 8%, 10%, 12% or more. In some years – this is one, so far – that’s perfectly achievable. But in other years, you could see losses of 10%, 20% or more. The sad fact is that you can’t control what the markets will give you, and the returns you get today from safe investments, such as bank CDs, won’t keep up with inflation.

OPTIMISM: Americans about finances

feel

better

Your best bet, then, is to increase your savings. Consider a saver whose salary is $35,000. Every year, she gets a 3% raise. She socks away 5% of her income annually and earns an average a year of 5% through investing in a mix of stocks, bonds and bank CDs. After 30 years, she’ll have $174,000 in her account.

If she bumps up her annual savings to 7% a year, she’ll have about $244,000.

It’s not a fortune. But it’s a sure bet, unlike trying to time the stock market.

Saving more means spending less, and that’s not always easy. One way is to invest through an individual retirement account or a 401(k) plan. Both let you invest pre-tax money, which is easier on your budget. If your employer matches your 401(k) contribution, all the better.

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Events

Anniversary Celebrations (listed by state, date) Louisianna * October 21st, 2013: WXOK-AM 1460 in Baton Rouge, Louisianna will host their 60th Year Anniversary Celebration in Baton Rouge. This is the station’s biggest annual event. For information about performance slots, sponsorships, vendor opportunities and more, call J’Michael Francois, PD, at 225-929-5129.

Texas * November 21st - 23rd, 2013: The Texas Gospel Announcers Guild - GMWA presents their 24th Anniversary Celebration in Texas. For more details as they become available, visit www.texasgag.com. (Photo: Bill Martin, State President).

Virginia * September 2013: The Virginia Gospel Announcers Guild – GMWA presents their 11th Anniversary Celebration. For more details as they become available, visit

www.vagag.info or call Ed Stephens, State President, at 804-347-0747. (Photo: Ed Stephens).

music, including Gospel and Christian.

For details as they become available, visit www.grammy.com.

Award Presentations (by major organizations)

Stellar Awards * January 2014: The 29th Annual Stellar Gospel Music Awards will be held.

Tickets will be available exclusively from TicketMaster (1-800-733-6779 or www.

TicketMaster.com). For more details as they become available, visit www.thestellarawards.com.

Gospel Music Association (GMA) Dove Awards * October 15th, 2013: The 44th Annual Gospel Music Association (GMA) Dove Awards will be held in Nashville, Tennessee. For details as they become available, visit www.doveawards. com.

Grammy Awards * February 2014: The 56th Annual Grammy Awards will be presented at the Staples Center in Los Angeles, CA. This popular annual event covers all genres of

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Award Presentations by others in the USA (listed by state, date) Florida * February 2014: The 8th Annual South Florida Gospel Music Awards 2014 will

Events

be held. The event will feature networking, showcases, vendors, an awards presentation and much more. For more details as they become available, visit www.sfgma.com or call Peppi Hendrix at 561-853-8300.

Texas * February 2014: The 16th Annual Texas Gospel Music Excellence Awards will be held in Houston, TX. For details as they become available, call Pastor Larry Davies at 281-935-3573.

Coming Soon

Conferences (listed by state, date) Georgia * February 2014: The Gospel Heritage Praise and Worship Conference 2014 will be held.

For details as they become available, visit www.gospelheritage.org or call Dr. Teresa Hairston, President, at 770-866-2427. (Photo: Dr. Teresa Hairston).

PASTORS from page 23 a robber and a pimp, Bishop Ron Gibson was the least likely person to end up a preacher.

He now changes the lives of 4,500 people each week at the Life Church of God in Christ, which he started with only nine people in the congregation. Through it all he’s accumulated great wealth, power and purpose. However, there’s one thing he and his wife would give it all away for – a child.

Pastor Jay Haizlip (@jayhaizlip) One of the pioneering greats of competitive skateboarding, Pastor Jay Haizlip, originally from Gadsden, Alabama, collected big trophies, bigger paychecks and high-end sponsors, but fell deep into drugs, and into the crack houses of Huntington Beach and Long Beach, California. Back in the crack houses again, this time he’s not there for drugs – he’s helping rescue souls for the Kingdom. Serving as Senior Pastor of The Sanctuary of Huntington Beach, Pastor Jay Haizlip reaches out to troubled youth, finding them in prisons, skate parks and the same crack houses he once shot dope in.

“Pastors of L.A.” (working title) is produced by L. Plummer Media in association with Relevé Entertainment, with Lemuel Plummer, Holly Carter and Chris Costine serving as Executive Producers.

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