Andrew Harmon


 

 

 

Sickle Cell Disease Association of America
Philadelphia/ Delaware Valley Chapter
“Celebrating 30 Years of Service to the Community”

Sickle Cell Disease is an inherited blood disorder, characterized primarily by chronic anemia and periodic episodes of pain. The underlying problem involves hemoglobin, a component of the red cells in the blood. The hemoglobin molecules in each red blood cell carry oxygen from the lungs to the body, organs and tissues and bring carbon dioxide back to the lungs.

In Sickle Cell Disease the hemoglobin is defective. After the hemoglobin molecules give up their oxygen, some of them may cluster together and form long rod-like structures. These structures cause the red blood cells to become stiff, which are normally soft and donut shaped, creating difficulty for the sickled red blood cells to squeeze through small blood vessels. This causes them to stack up and create blockages that deprive the organs and tissue of oxygen carrying blood. This process produces periodic episodes of pain and can ultimately damage the tissues and vital organs and lead to other serious medical problems.

Sickle Cell Disease is a global disease affecting approximately 90,000 people in the United States with those of African descent in the greatest numbers. In addition people of Hispanic, Native American, Asian, Sicilian, Greek, Italian, Indian, Turkish and Mediterranean ancestry are also affected, but in smaller percentages.

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, the funding for the Sickle Cell Program was eliminated, 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 since the hospital focused primarily on meeting the medical needs of the patients.

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, both affected by sickle cell disease. Willie passed away in 1996 after giving great service, love and compassion to individuals with sickle cell disease. On April 2, 1998, Rev. Brandon also passed away due to complications of sickle cell disease. Due to his lifelong mission and commitment to advocacy in the sickle cell community the agency’s annual sickle cell walkathon was named in his memory.

SCDAA/PDVC was established to provide comprehensive psychosocial services to children, adolescents and adults affected by sickle cell disease (SCD) and sickle cell trait (SCT). Over the years, they have worked in partnership with local pediatric and adult hospitals to provide supportive services and programs to meet the needs of individuals and families affected by sickle cell disease.

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.

For the past 29 years SCDAA/PDVC has been providing resources and supportive services to those affected in Philadelphia, Delaware, Bucks, Chester and Montgomery counties. Services include case management; single gene genetic counseling; transportation for pediatric families; hospital/ clinic visits; advocacy; newborn screening follow-up; community outreach/education; referrals and programs to include: Leroi Simmons Scholarship Fund; Cooperative Sickle Cell Blood Donor Program; Multicultural Initiative; Sickle Cell Sabbath and the following support groups: Young Adult Transition Team (Y.A.T.T- 18-25 year olds.) Project Self –Care (26 and older) and SOUL+ Mates (Sickle Cell Overcomers United for Life & their Mates- couples).

SCDAA/PDVC will sponsor the 4th Annual Dancing with the Philadelphia Stars event on April 22, 2012. For more information visit our website at www.dancingwiththephiladephiastars.com.  The agency will also celebrate its 30th year anniversary on July 2, 2012.

With September being recognized as National Sickle Cell Awareness Month, SCDAA/PDVC will sponsor their Annual Sickle Cell Seminar on September 15, 2012 and the 15th year anniversary of the Walter E. Brandon Sickle Cell Walkathon on September 22, 2012. This year a run has been added to increase participation. For more information about how you can support the agency and/or participate in upcoming events visit our website at www.sicklecelldisorder.com www.firstgiving.com/sicklecellphiladelphia or contact us at 215-471-8686.


 

 

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