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 the sickle cell patients without support. As a result of this 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 the patients since the hospital focused primarily on the 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 and provided various programs to meet the needs of individuals in the sickle cell community.
In 1995, the agency became a 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 his commitment to advocacy in the sickle cell community the agency’s annual sickle cell walk-a-thon was named in his memory.
As an agency, SCDAA/PDVC has served the sickle cell community for the past 25 years by providing resources and assistance to those affected in Philadelphia, Delaware, Bucks, Chester and Montgomery counties. The agency provides the following services: case management; counseling; round trip transportation for pediatric families; hospital/clinic visits; advocacy; newborn screening follow-up, community outreach and education and programs, including: Leroi Simmons Scholarship Fund; Cooperative Blood Donor Program; Project Self–Care (adult support group); Y.A.T.T. (Young Adult Transition Team-adolescents and young adults); and SOUL+Mates (couples support group).
During September, which is recognized as National Sickle Cell Awareness Month, SCDAA/PDVC facilitates several events, including: Annual Sickle Cell Seminar and the Walter E. Brandon Sickle Cell Walk-a-thon.
- This year the Sickle Cell Seminar will be September 20, 2008 at the International House at 3701 Chestnut Street from 10:00 AM to 4:00 PM.
- The 11th Anniversary Walter E. Brandon Sickle Cell Walk-a-thon and “Lighten the Load” CD Launch Party on September 27, 2008 at the Carousel House at Belmont Avenue & North Concourse Drive from 8:00 AM to 2:00 PM.
For more information about The Sickle Cell Disease Association of America, SCDAA/PDVC, please call 215-471-8686 or visit http://www.sicklecelldisorder.com/.
For more information about Sickle Cell Disease, visit the PhillyHealthInfo.org Sickle Cell Disease page.