Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter
The Sickle Cell Disease Association of America, Philadelphia/ Delaware Valley Chapter (SCDAA/PDVC) formerly known as the Sickle Cell Genetic Disease Council of Southeastern Pennsylvania, began as a patient therapy support group comprised of 30 members that met monthly at Pennsylvania Hospital from 1977- 1982. The purpose of the group at that time was to share their concerns, offer support and plan various activities. However in 1982, Pennsylvania Hospital lost their federal funding for the Sickle Cell Program, leaving sickle cell patients without any support. As a result, the patient group was encouraged by the hospital social worker to establish their own agency with a focus on social services. This was an important issue for them since the hospital focused primarily on meeting their medical needs.
So on July 2, 1982, the Sickle Cell Genetic Disease Council of Southeastern Pennsylvania became incorporated as a 501 C (3) non-profit agency. The two co-founders were Rev. Walter E. Brandon and Willie J. Hubert. The agency was established to provide comprehensive psychosocial services to children, adolescents and adults who were affected by sickle cell disease (SCD) and sickle cell trait (SCT). Over the years, they worked closely with the hospitals to provide supportive services and programs to meet the needs of individuals and families in the sickle cell community.
In 1995, the agency became a chapter member of the Sickle Cell Disease Association of America, and officially changed its name to the Sickle Cell Disease Association of America, Philadelphia/ Delaware Valley Chapter. Willie J. Hubert, Co-Founder of the agency passed away in 1996 after giving great service, love and compassion to individuals with sickle cell disease. On April 2, 1998, Rev. Walter E. Brandon, Co-Founder also passed away due to complications of sickle cell disease. Because of his lifelong mission and commitment to advocacy on behalf of the sickle cell community the annual sickle cell walkathon was named in his memory.
As an agency, SCDAA/PDVC has served the sickle cell community for the past 27 years by providing resources and support to those affected in Philadelphia, Delaware, Bucks, Chester and Montgomery counties. The agency provides case management; single gene genetic counseling; transportation for pediatric families; hospital/ clinic visits; advocacy; newborn screening follow-up, community outreach/ education and programs to include: Leroi Simmons Scholarship Fund; Cooperative Sickle Cell Blood Donor Program; Be Sickle Smart Community Based Initiative, Multicultural Initiative; Sickle Cell Sabbath and support groups: Young Adult Transition Team (Y.A.T.T- young adult.) Project Self –Care (adults) and SOUL+ Mates (Sickle Cell Overcomers United for Life & their Mates- couples).
During September which is recognized as National Sickle Cell Awareness Month, SCDAA/PDVC coordinates an Annual Sickle Cell Seminar and the Walter E. Brandon Sickle Cell Disease Walkathon. Visit their website for more information.
For more information about Sickle Cell Disease, visit the PhillyHealthInfo.org Sickle Cell Disease page.
