SCDAA SHINES THE LIGHT ON SICKLE CELL
Join SCDAA’s Twitter Party
June 19, 2020
9 a.m. – 9 p.m.
(June 15, 2020 – Hanover, MD) On June 19, the Sickle Cell Disease Association of America, Inc. (SCDAA) is joining with people all across the country and indeed around the globe to Shine the Light on Sickle Cell Disease. It is collaboration between SCDAA, SiNERGe, advocacy groups, community based organizations, hospitals, governments and other key stakeholders to celebrate June 19th as World Sickle Cell Awareness Day, as designated by the United Nations.
SCDAA is hosting an all-day Twitter Party, from 9a.m. to 9 p.m. to help increase public knowledge and understanding of sickle cell disease and sickle cell trait Learn about the myths surrounding sickle cell disease. Hear directly from people with sickle cell disease about the challenges they face daily. See their videos. SCDAA invites the SCD community to share more of your stories and experiences!
Tweet with SCDAA. Join the virtual gathering at https://twitter.com/SCDAAorg.
Additional ways to participate include:
Donating blood. SCDAA member organizations will be holding Virtual Blood Drives in partnership with the Red Cross.
Since mid-March, the number of African Americans donating blood with the Red Cross has dropped by more than half due to COVID-19, reducing the availability of blood needed for sickle cell patients. So please, give the gift of life.
Wear RED and/or Shine A Light on June 19th at 8:00 p.m., no matter what time zone or where in the world you are. Help increase awareness and advocacy and encourage others to do the same.
SCDAA thanks you in advance for helping to Shine The Light on Sickle Cell Disease.
SCDAA’s mission is: To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. Visit www.sicklecelldisease.org.
SCD, an inherited blood disease, causes red blood cells to have a sickle shape. Because of their stiffness and unusual form, blood flow is blocked to different tissues, ultimately damaging them. These sickle-shaped red blood cells contain an abnormal type of hemoglobin, hemoglobin S; normal red blood cells have hemoglobin A. Hemoglobin is important because it helps carry oxygen throughout the body. There is currently no universal cure for SCD.
Sickle cell Improvement across the NorthEast ReGion through Education (SiNERGe) is a multi-state collaborative that includes sickle cell providers and community-based organizations dedicated to improving care for individuals with sickle cell disease throughout the Northeastern United States, Puerto Rico, and the U.S. Virgin Islands. The collaborative is led by Johns Hopkins Medicine and is funded by the Health Resources and Services Administration through the Sickle Cell Disease Treatment Demonstration Program. Together SiNERGe members are working to improve access to high quality care for individuals living with sickle cell disease and increase number of providers who possess the knowledge, skills and attitudes to deliver high quality care. SiNERGe’s community-based organization (CBO) initiative is led by the William E. Proudford Sickle Cell Fund, Inc.