HANOVER, Md.—In celebration of World Sickle Cell Awareness Day on June 19, as recognized by the United Nations – sickle cell disease community-based organizations across the nation and around the world are holding activities to raise awareness through the “Shine the Light on Sickle Cell Disease” campaign. The campaign is a collaborative effort in support of World Sickle Cell Awareness Day. This campaign is spearheaded by the Sickle Cell Improvement across the Northeast Region through Education (SiNERGe) and the Sickle Cell Disease Association of America, Inc., along with community-based organizations; sickle cell advocacy groups; hospitals; governments and other key stakeholders. The public is invited to wear something red and join with friends, family, neighbors and their community, as people around the nation and across the globe, hold local gatherings on June 19, 2021, to “Shine the Light on Sickle Cell.”To commemorate the day, numerous initiatives are scheduled to help communities stand up and speak out to increase awareness, build support networks and strengthen collective resolve to advocate for a universal cure for sickle cell disease. Some communities have buildings scheduled to be lit up in red. In addition, there are educational sickle cell disease programs available in person and online. Local and state governments are raising awareness with proclamations as well. Film and television actor and sickle cell advocate Dexter Darden said, “Sickle cell disease primarily affects the minority community and for that reason it does not get the publicity or recognition it deserves. Now is the time to shine the light on sickle cell disease.” To learn about more scheduled events throughout the country; visit the Facebook event page at Shine the Light on Sickle Cell 2021 | FacebookTo view a short video clip on the campaign with Dexter Darden, click on the following link https://youtu.be/vdRvigw5jkg
Shine the Light Infomercial: https://www.youtube.com/watch?v=f2TqqCWBZQU
Paint the Town Red- Philadelphia Key Landmarks/Buildings- June 18-21- https://youtu.be/iCu6FbQs25U
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About Sickle Cell Disease: Sickle cell disease (SCD) affects an estimated 100,000 people in the United States, an estimated 52,000 people in Europe, and millions of people throughout the world, particularly among those whose ancestors are from sub-Saharan Africa. It also affects people of Hispanic, South Asian, Southern European, and Middle Eastern ancestry. SCD is a lifelong inherited blood disorder that impacts hemoglobin, a protein carried by red blood cells that delivers oxygen to tissues and organs throughout the body. Due to a genetic mutation, people with SCD form abnormal hemoglobin known as sickle hemoglobin. Through a process called hemoglobin polymerization, red blood cells become sickled – deoxygenated, crescent-shaped, and rigid. The sickling process causes hemolytic anemia (low hemoglobin due to red blood cell destruction) and blockages in capillaries and small blood vessels, which impede the flow of blood and oxygen throughout the body. The diminished oxygen delivery to tissues and organs can lead to life-threatening complications, including stroke and irreversible organ damage.
About SiNERGe: The Sickle cell Improvement across the NorthEast ReGion through Education (SiNERGe) is a multi-state collaborative under the leadership of Johns Hopkins dedicated to improving care for individuals with sickle cell disease throughout the Northeastern United States, Puerto Rico, and the U.S. Virgin Islands funded by the Health Resources and Services Administration through the Sickle Cell Disease Treatment Demonstration Program. SiNERGe includes sickle cell providers and community-based organizations in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, West Virginia, Puerto Rico, and the US Virgin Islands. Visit https://www.hopkinsmedicine.org/Medicine/sickle/ and www.wepsicklecell.org
About the Sickle Cell Disease Association of America (SCDAA): The SCDAA advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. Visit www.sicklecelldisease.org
