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help spread the word about sickle cell disease
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Hope
find out about research for new treatments and a universal cure
Helpful information to support your efforts to Shine The Light!
Shine The Light On Sickle Cell
A national awareness campaign to celebrate World Sickle Cell Awareness Day on June 19, 2021.
We invite you to join with friends, family, neighbors and others in your community, as people around the nation and across the globe, host and hold local gatherings to shine the light on sickle cell disease. Together, we must and will find a universal cure for sickle cell disease!
Want more information about organizing and/or attending a “Shine the Light on Sickle Cell” event in your community?
Shine The Light On Sickle Cell. A Collaboration between SiNERGe and Sickle Cell Disease Association of America, Inc. Shine the Light on Sickle Cell is supported by the Health Resources and Services Administration (HRSA) as part of the Sickle Cell Disease Treatment Demonstration Project. For more information visit HRSA.gov.
Here is some helpful information to support your efforts to Shine The Light!
What is Shine the Light on Sickle Cell?
Sickle Cell Disease community-based organizations are organizing gatherings all across the nation and around the world to “Shine the Light on Sickle Cell Disease” while celebrating World Sickle Cell Disease Awareness Day in order to elevate awareness of this serious public health concern affecting more than 100,000 people in the United States and 100 million people around the world.
Who is organizing Shine the Light on Sickle Cell?
Shine the Light on Sickle Cell is a collaboration between SiNERGe (Sickle Cell improvement in the NorthEast ReGion through education) and the Sickle Cell Disease Association of America. Shine the Light is supported by the Health Resources and Services Administration (HRSA) as part of the Sickle Cell Disease Treatment Demonstration Project. For more information, visit HRSA.gov.
Members of the 2021 Planning Committee for Shine the Light are:
Zemoria Brandon
Co-Chair, Shine the Light Steering Committee; Administrator/Social Worker, Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter
Donnette Carroll
Co-Chair, Shine the Light Steering Committee; Board Chair, Sickle Cell Thalassemia Patients Network, (SCTPN)
Judy Anderson
Executive Director, Sickle Cell Association, Norfolk, Virginia
Yvette Armstead
CEO, Armstead-Barnhill Foundation for Sickle Cell Anemia
Jacqueline Baker
Founder, The Westchester Sickle Cell Advocacy Network
Sakiyyah Burwell-Darden
Executive Assistant/CHW, Sickle Cell Association of New Jersey
Beverley Francis-Gibson
President & CEO, Sickle Cell Disease Association of America
Barbara Harrison
Director at Large, Sickle Cell Association of the National Capital Area, Inc
Linda Howard, Member Services Coordinator, Sickle Cell Disease Association of America
Betty Johnson
SiNERGe Liaison, Association for the Prevention of Sickle Cell Anemia Harford and Cecil Counties and the Eastern Shore
Mary LaMar
Executive Director, Sickle Cell Association of New Jersey
Meryl Lancaster
Board Member, Citizens for Quality Sickle Cell Care
Sabrina Lewis
Ambassador of Wellness, CHW, Sickle Cell Thalassemia Patients Network (SCTPN)
Murine Lusakweno-Chandler
Outreach Liaison/Educator, Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter
Crystal Rivas
Administrative Assistant, Candice’s Sickle Cell Fund
Shanta Robertson
Secretary, Maryland Sickle Cell Disease Association
Sarai Santiago
Community Health Worker, Sickle Cell Thalassemia Patients Network (SCTPN)
Stanley Simpkins
Executive Director, Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter
What is the cost to participate in Shine the Light on Sickle Cell?
There is no cost to participate in Shine the Light.
Does Shine the Light on Sickle Cell raise money or collect fees?
We do not collect money or fees in connection with Shine the Light. Community-based and non-profit organizations are solely responsible for the events and activities that they organize to celebrate Shine the Light. Please refer to the specific organization for details about the costs, if any, associated with their events or activities.
How can community-based organizations and non-profit organizations get involved?
Hosting a Shine the Light community gathering is easy … just follow these 5 steps:
- Select … a program/activity/event
- Prepare … for your gathering
- Promote … your gathering
- Hold … your gathering on June 19
- Celebrate … your success
No registration is required to host a Shine the Light.
But, we’d love to hear about it! Send us an email at ShinetheLightonSickleCell@gmail.com or post a note on the Shine the Light Facebook Event page.
Is participation limited to community-based organizations and non-profit organizations?
Anyone, and any type of business or organization, can participate in Shine the Light! Take a look at the Community Gathering Guide for tips on how to join in.
Paint The Town Red
Philadelphia 2021
Organized by:
Sickle Cell Disease Association of America – Philadelphia/Delaware Valley Chapter
Photo Credit: Imagic Digital
INDIVIDUALS LIVING WITH SCD IN THE U.S.
HOSPITALIZATIONS ANNUALLY DUE TO SCD IN THE U.S.
NEW DRUGS APPROVED BY FDA SINCE 2017
THERAPIES CURRENTLY IN PHASE III CLINICAL TRIALS
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