Businesses, hospitals, municipal buildings, museums, schools, landmarks to be lit up red on World Sickle Cell Awareness Day to show support for sickle cell warriors, raise awareness of sickle cell disease, advocate for a universal cure
Sister organization, Global Healthcare Company, NFL Team, Building Owners Management Association Join the campaign
PHILADELPHIA, June 13, 2024 /PRNewswire/ — A collaboration of 46 nonprofit, community organizations and medical providers in the northeastern US is set to Shine the light on the sickle cell on June 19, World Sickle Cell Awareness Day. This collective initiative – which includes the lighting in the red of businesses, hospitals, municipal buildings, museums, schools and other landmarks – aims to unite individuals and communities to support 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 the Building Owners Management Association-Philadelphia will also participate in the campaign supported by the federal Health Resources and Services Administration (HRSA). 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 accomplish when communities, health care providers and advocates come together,” she said. Johns Hopkins University School of Medicine Professor Dr. Rosalyn Stewart. “Our goal is to make Sickle Cell Disease as common as COVID or HIV and to inspire action toward a future where Sickle Cell Disease is better understood, better treated and ultimately cured.”
SCD is a genetic blood disorder that disproportionately affects people of African descent, yet remains widely misunderstood and underrepresented in the public discourse. With more than 100,000 people in the US affected by SCD and millions more carrying Sickle Cell Trait, the need for improved access to care and advances in research is critical. People living with SCD often experience numerous health complications, such as stroke, acute chest syndrome, and chronic organ damage, leading to significantly reduced life expectancy compared to the general population and earning them the name of the sickle cell warrior. Despite these challenges, there is currently no universal cure for SCD.
“I am deeply committed to shining a light on sickle cell disease and advocating for better care for people with the disease, a disease that causes severe episodic and chronic pain. Those with sickle cell disease often report poor interpersonal treatment in health care settings.” said Dr. Sophie LanzkronDirector of Hematology Branch at Thomas Jefferson University. “Eliminating discrimination in health care settings is imperative, as research has shown its association with greater pain severity, anxiety, depression and sleep problems.”
Shine the Light on Sickle Cell operates primarily in the Northeast region, including New EnglandmeansAtlantic, Virginia, West VirginiaThe US Virgin Islandsand Puerto Rico. Sickle Cell's signature feature is Shine the Light on lighting of landmark structures and buildings in red – the iconic blood cell color associated with the genetic disorder and a symbol of the urgency, passion and unwavering determination to fight this disease – in the US and around the world June 19.
Major milestones that will shine a light on sickle cell this year include Franklin Institutehis Hospital University of Pennsylvaniaand Boathouse Row (Philadelphia) Novo Nordisk headquarters (Township of Plainsboro, New Jersey) the Baltimore Ravens' M&T Bank Stadium and the Johns Hopkins University Dome (Baltimore) the state house of Rhode Island (Providence) and University of Maryland's Capital Region Medical Center, Bowie Health Center and Laurel Medical Center (Washington metropolitan area).
Zemoria Brandon is a longtime sickle cell advocate whose husband died of the disease in 1998. Now in her role as chair of the Shine the Light on Sickle Cell Coordinating Committee and administrator/social worker with the Sickle Cell Association of America, Philadelphia/Delaware Valley Chapter , Ms Brandon said: “By lighting up our communities in red, we symbolize 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 in the Northeastern United States, grew into a campaign and has now become a movement. It's exciting that we've seen participation from 29 states across the country and 21 countries around the world.”
Organizations participating in the collaboration are going to engage their community in various activities such as sickle feasts, candle vigils, blood drives, awareness walks, wearing red, posting photos and videos on social media and more. Shine the light on the 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
- World Sickle Cell Day Conference sponsored by the Sickle Cell Thalassemia Patient Network at New York to discuss National Heart, Lung, and Blood Institute guidelines and American Society of Hematology clinical guidelines
- A Sickle Cellabration hosted by his Sickle Cell Association New Jersey as part of an annual Juneteenth Block Party at New Jersey
- A dinner event hosted by the Anemia Falciforme Sickle Disease Association at Puerto Rico
- Shine the Light on Sickle Cell event hosted by the Sickle Cell Association (Norfolk) in conjunction with the Juneteenth United Parade on its east coast 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 mark World Sickle Cell Awareness Day on June 19 as proclaimed by the United Nations in 2008 and to support universal treatment. Shine the Light on Sickle Cell is led by a partnership of 46 non-profit, community organizations and medical providers in Northeastern United States, SiNERGe (Sickle Cell Improvement in the North East Region through education), which aims to raise awareness of Sickle Cell Disease and support treatments and better outcomes for people with the disease. Learn more at Shine the light on the sickle cell.
Media contact
ShinePR for Shine the Light on Sickle Cell [email protected]
Participating organizations and providers 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 East Coast*
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
Sickle Cell Disease Association of Massachusetts*
New Hampshire
Dartmouth Hitchcock Medical Center
New Jersey
Donna T. Darrien Sickle Cell Memorial Foundation
Newark Beth Israel Medical Center
Sickle Cell Association of New Jersey*@
New York
Candice's Sickle Cell Fund^
Monefiore Children's Hospital
Sickle Cell Counseling Network of New York
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 Patient Network*@
Sickle Cell Warriors of Buffalo^
Westchester Sickle Cell Outreach
Pennsylvania
Children's Sickle Cell Foundation Inc.*#@
Crescent Foundation@
Sickle Cell Association of America, Philadelphia/Delaware Valley Chapter*#@
Sickle Cell Council of South Central Pennsylvania*#
His hospital University of Pennsylvania
Puerto Rico
Sickle cell disease of Falciforme Anemia en Puerto Rico
Rhodes 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
*Sickle Cell Disease Association of America (SCDAA) Chapters
#Members of Pennsylvania Sickle Cell Providers Network (PASCDPN)
^ Affiliates of the Sickle Cell Thalassemia Patient Network (SCTPN)
Newborn screening sponsors @HRSA
SOURCE Shine the Light on Sickle Cell
