46 NONPROFIT, COMMUNITY-BASED ORGANIZATIONS AND MEDICAL PROVIDERS IN THE NORTHEAST U.S. COLLABORATE TO 'SHINE THE LIGHT ON SICKLE CELL' ON JUNE 19

Businesses, Hospitals, Municipal Buildings, Museums, Schools, Landmarks To Illuminate In Red On World Sickle Cell Awareness Day To Show Support of Sickle Cell Warriors, Raise Awareness of Sickle Cell Disease, Advocate For A Universal Cure

Fraternal Organization, Global Healthcare Company, NFL Team, Building Owners Management Association Join Campaign

PHILADELPHIA, June 13, 2024 /PRNewswire/ -- A collaborative of 46 nonprofit, community-based organizations and medical providers in the Northeast U.S. is set to Shine the Light on Sickle Cell on June 19, World Sickle Cell Awareness Day. This collaborative initiative–which includes the illumination in red of businesses, hospitals, municipal buildings, museums, schools, and other landmarks–aims to unite individuals and communities in support of sickle cell warriors, raise awareness of Sickle Cell Disease (SCD) and advocate for a universal cure. Fraternal organization Phi Beta Sigma Fraternity, Inc., global healthcare company Novo Nordisk Inc., the Baltimore Ravens, and Building Owners Management Association-Philadelphia will also join the campaign that is supported by the federal Health Resources and Services Administration (HRSA) as part of the Sickle Cell Disease Treatment Demonstration Project.

"Now in its sixth year, Shine the Light on Sickle Cell is a powerful testament to what we can achieve when communities, healthcare providers, and advocates unite," said Johns Hopkins University School of Medicine Professor Dr. Rosalyn Stewart. "Our goal is to make Sickle Cell Disease as common a topic as COVID or HIV and to inspire action towards a future where Sickle Cell Disease is better understood, better treated, and ultimately cured."

SCD is a genetic blood disorder that disproportionately affects individuals of African descent yet remains widely misunderstood and underrepresented in public discourse. With over 100,000 people in the U.S. affected by SCD and millions more carrying the Sickle Cell Trait, the need for improved access to care and research advancements is critical. Individuals living with SCD often face numerous health complications, including stroke, acute chest syndrome, and chronic organ damage, leading to a significantly reduced life expectancy compared to the general population and earning them the name of sickle cell warrior. Despite these challenges, there is currently no universal cure for SCD.

"I am deeply committed to shining the light on sickle cell and advocating for better care of people with the disease, a disease that causes severe episodic and chronic pain. Those with sickle cell disease frequently report poor interpersonal treatment within health-care settings," said Dr. Sophie Lanzkron, Director of the Division of Hematology at Thomas Jefferson University. "Eliminating the discrimination in health-care settings is imperative as research has proven its correlation with greater pain severity, stress, depression, and sleep issues."

Shine the Light on Sickle Cell primarily operates in the Northeast region, encompassing New England, the mid-Atlantic, Virginia, West Virginia, the U.S. Virgin Islands, and Puerto Rico. Shine the Light on Sickle Cell's hallmark is the illumination of landmark structures and buildings in red – the emblematic color of the blood cell associated with the genetic disorder and a symbol of the urgency, passion, and unwavering determination in the fight against this disease – in the U.S. and around the world on and around June 19.

Major landmarks that will Shine the Light on Sickle Cell this year include the Franklin Institute, the Hospital of the University of Pennsylvania, and Boathouse Row (Philadelphia); Novo Nordisk headquarters (Plainsboro Township, New Jersey); the Baltimore Ravens' M&T Bank Stadium and the Johns Hopkins University Dome (Baltimore); the Rhode Island State House (Providence); and University of Maryland's Capital Region Medical Center, Bowie Health Center, and Laurel Medical Center (Washington, D.C. metropolitan area).

Zemoria Brandon is a longtime sickle cell advocate whose husband passed away from the disease in 1998. Now in her role as chair of the Shine the Light on Sickle Cell Steering Committee and administrator/social worker with Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter, Ms. Brandon said: "By illuminating our communities in red, we are symbolizing the urgency and passion needed to address the challenges of Sickle Cell Disease. Although Shine the Light on Sickle Cell began six years ago as an initiative in the Northeastern United States, it grew into a campaign, and now it has become a movement. It is uplifting to have seen participation from 29 states across the country and 21 countries around the world."

Organizations in the collaborative are set to engage their community in various activities, including sickle celebrations, candlelight vigils, blood drives, awareness walks, wearing red, posting photos and videos on social media, and more. Shine the Light on Sickle Cell events (click for details and registration information) include:

• A Juneteenth Blood Drive and marquee illumination hosted by the Sickle Cell Association of Delaware at Cornerstone Fellowship Baptist Church in Wilmington
• A World Sickle Cell Day Conference sponsored by the Sickle Cell Thalassemia Patients Network in New York to discuss National Heart, Lung, and Blood Institute guidelines and American Society of Hematology clinical guidelines
• A Sickle Cellabration hosted by the Sickle Cell Association of New Jersey as part of an Annual Juneteenth Block Party in New Jersey
• A dinner event hosted by the Anemia Falciforme Sickle Cell Disease Association in Puerto Rico
• A Shine the Light on Sickle Cell event hosted by the Sickle Cell Association (Norfolk) in conjunction with the Juneteenth United Parade on the Eastern Shore of Virginia

Join the conversation about Shine the Light on Sickle Cell using #shinethelightonsicklecell2024.

About Shine the Light on Sickle Cell

Shine the Light on Sickle Cell is an annual community awareness campaign to celebrate World Sickle Cell Awareness Day on June 19 as proclaimed by the United Nations in 2008 and to advocate for a universal cure. Shine the Light on Sickle Cell is led by a collaborative of 46 nonprofit, community-based organizations and medical providers in the Northeast United States, SiNERGe (Sickle Cell Improvement in the Northeast Region through education), whose aim is to increase awareness of Sickle Cell Disease and advocate for treatments and better outcomes for individuals with the disease. Learn more at Shine the Light on Sickle Cell.

Media Contact
ShinePR for Shine the Light on Sickle Cell [email protected]

Participating organizations and provider organizations include (by state):

Connecticut

Citizens for Quality Sickle Cell Care*
University of Connecticut

Delaware

Christiana Care
Sickle Cell Association of Delaware

District of Columbia

Faces of Our Children
Sickle Cell Association of the National Capital Area Inc.

Maine

Maine Medical Center

Maryland

Adult and Pediatric to Adult Sickle Cell Clinic, Johns Hopkins University
Armstead-Barnhill Foundation for Sickle Cell Anemia
Association for the Prevention of Sickle Cell Anemia Inc., Harford and Cecil Counties and the Eastern Shore*
Christopher Gipson Sickle Cell Moyamoya Foundation
Eastern Shore of Maryland Sickle Cell Association
Johns Hopkins University
Maryland Sickle Cell Disease Association*
Project Spirit Sickle Cell
Sally's Sunshine Foundation
Sickle Cell Coalition of Maryland
William E. Proudford Sickle Cell Fund Inc.

Massachusetts

Boston University
Massachusetts General Hospital
Massachusetts Sickle Cell Disease Association*

New Hampshire

Dartmouth Hitchcock Medical Center

New Jersey

Donna T. Darrien Memorial Foundation for Sickle Cell
Newark Beth Israel Medical Center
Sickle Cell Association of New Jersey*@

New York

Candice's Sickle Cell Fund^
Children's Hospital of Monefiore
New York Sickle Cell Advisory Network
NYC Health + Hospitals
New York Sickle Cell Advocacy Network (formerly Queens Sickle Cell Anemia Network)*
Sickle Cell Advocates of Rochester^
Sickle Cell Awareness Foundation Corp International
Sickle Cell Thalassemia Patients Network*@
Sickle Cell Warriors of Buffalo^
Westchester Sickle Cell Outreach

Pennsylvania

Children's Sickle Cell Foundation Inc.*#@
Crescent Foundation@
Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter*#@
South Central Pennsylvania Sickle Cell Council*#
Hospital of the University of Pennsylvania

Puerto Rico

Anemia Falciforme Sickle Cell Disease en Puerto Rico

Rhode Island

Rhode Island Hospital

Vermont

University of Vermont

Virginia

Life and Family Foundation Richmond (formerly Living with Sickle Cell RVA)
Sickle Cell Association Inc.*

West Virginia

CAMC Institute for Academic Medicine

*Chapters of the Sickle Cell Disease Association of America (SCDAA)
#Members of the Pennsylvania Sickle Cell Disease Providers Network (PASCDPN)
^Affiliates of Sickle Cell Thalassemia Patients Network (SCTPN)
@HRSA Newborn Screening Grantees

SOURCE Shine the Light on Sickle Cell

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