Who We Are
The Greater Boston Sickle Cell Disease Association, Inc. is a federally approved 501(c) 3, local non-profit organization dedicated to advocating for and providing support services to patients and families facing the challenges associated with this incurable disease. Our goals are to give persons living with SCD a chance to live healthier and more productive lives, and to promote awareness about SCD. The organization was founded in 1995 by Reverend Ronald Stephenson, who was moved to do something about the lack of sickle cell awareness and support services for families affected by SCD in our region. His motivation to form the group was kindled by the comments of an acutely ill patient with SCD, who informed him that her biggest problem and that of many patients with SCD was that “no one seemed to care.” As a way of showing patients with SCD that some people do care, the GBSCDA was formed with the participation and support of a small group of patients, their family members, and health care workers at Brigham & Women’s Hospital and Boston Medical Center. The mission of the organization at that time was to promote awareness of SCD and to provide limited support services for all patients with SCD in our region free of charge.
A volunteer run organization, GBSCDA’s membership is comprised of lay persons as well as medical and allied health professionals. The primary source of our funding is from donations and fundraising events.