About Us

Welcome to the Community Sickle Cell Support Group web-site. Now that you have logged on, we invite you to take your interest in sickle cell disease to another level by becoming a member of our Community Sickle Cell Support Group.

The Community Sickle Cell Support Group, Inc (CSCSG), is a 501(c) 3, nonprofit organization, which advocates and provides life enhancing support services to all sickle cell patients living in the Greater Boston Region.

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 effected by the Sickle Cell Disease (SCD) in our region. His motivation to form the group was kindled by the comments of an acutely ill patient with SCD, who complained to him that the biggest problem for most sickle cell patients is that “no one seemed to care.”

The CSCSG was formed with the participation of a small group of patients, their family members, health care workers at Brigham & Women's Hospital, and Boston Medical Center.

The vision was to provide support services for all patients with SCD in our region. 

Today the organization is at the forefront of sickle cell awareness in the Greater Boston Region, and provides a list of essential support services to patients with SCD from Brigham & Women’s Hospital, Boston Medical Center, Children’s Hospital, New England Medical Center, and a number of other area hospitals and community health centers.  Our support services include the following:

  • 24 hr on call beeper service
  • Transportation Voucher Program to assist patients with transportation from any local hospital after medical discharge to home;
  • Juice/Beverage Voucher Program to assist patients with issues of dehydration;
  • Referral to hospitals and agencies involved in the provision of health care and social services to sickle cell patients;
  • Chaplain visits;
  • Therapeutic Music Lessons (piano, violin, and drums) as an alternative therapy to help patients better cope with sickle cell disease;
  • Awareness Seminars pertaining to sickle cell disease, sickle cell trait, and screening;
  • Educational Scholarships to help selected patients with sickle cell disease with their pursuit of a college education;
  • Tutoring (Elementary and  High School);
  • Annual Summer Bus Trip for children with sickle cell disease;
  • Annual Christmas Party and other recreational activities; 
  • Bi-Annual Publication of Sickle Cell Connection Newsletter;
  • Patient Advocacy
  • Support Group Meetings

 

 

Board of Directors

Rev. Ronald Stephenson, M. Div.

President

Jacqueline Rodriguez -Louis, MPH, M.Ed.

Executive Director

Neil Gilbert

Chair

Lillethe Jarrett, M.Ed.

Secretary

Robert Vines

Treasurer

Kenneth Bridges, M.D.

AnnMarie Holder, JD

Anne Onogiogu, Ed.D, MPH, RN

 

 

Advisory Board

Suzette Oyeku, M.D.

David Holder, M.D.

Capt. Nichole King-Campbell

Tamikha Cantave, M.A.T.

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