Sickle Cell Disease Awareness

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Cedie


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Joined Apr 21 2011
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General Info

MALE
57 years old
Boston
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Sickle Cell Disease Awareness

Recent Activity
  • Cedie is now a member Apr 26, 2011 
About Me

About The Greater Boston Sickle Cell Disease Association

The Greater Boston Sickle Cell Disease Association formally known as Community Sickle Cell Support Group, Inc. (GBSCDA) was founded in 1995 by Reverend Ronald Stephenson, who was moved to address the lack of awareness, advocacy and support services for patients in Massachusetts with Sickle Cell Disease (SCD).

Mission:

The mission of the GBSCDA is to offer comprehensive support services to sickle cell patients and their immediate family members in a charitable manner, support sickle cell disease research projects, and promote the awareness of sickle cell disease. GBSCDA provides a host of essential support services to over 300 sickle cell patients of all ages residing primarily in inner-city Boston neighborhoods.

Through a collaborative relationship, and in a shared goal of linking patients with SCD and their families to support services and education while improving then- quality of life, GBSCDA serves sickle cell patients from a number of area hospitals and health centers, including Brigham & Women's Hospital, Boston Medical Center, Children's Hospital Boston, New England Medical Center, Dana Farber Cancer Institute, and Beth Israel Deaconess Hospital

Located near Boston's Longwood Medical Area, the services we currently provide include:

• 24-hour on-call beeper service to support patients during emergencies

• Transportation Voucher Program to assist patients with transport from any local hospital

after medical discharge to home

• Juice/Beverage Program to assist patients with issues of dehydration (discussed in detail

in this proposal)

• Referrals to hospitals and other agencies involved hi the provision of health care and

social services to sickle cell patients

• Chaplaincy visits

• Therapeutic Music Lessons (piano, violin, drums) as an alternative therapy to help

patients cope with sickle cell disease

• Awareness Seminars pertaining to sickle cell disease and trait

• Educational Scholarships to help selected patients with sickle cell disease pursue a

college education

• Tutoring (elementary through 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 (please see attached sample

newsletter)

• Patient Advocacy

• Support Group Meetings

• Genetic Counseling

Patients with sickle cell disease need ongoing treatment, even when they are not having a painful crisis. The purpose of treatment is to manage and control symptoms, and to limit the frequency of crises. The Greater Boston Sickle Cell Disease Association is a 501(c) 3, which raises funds to support this underserved population. We need to raise $35,000 by December 31, 2010 to augment our services. We need your generous sponsorship and donations today.

Concluding Note:

For over 15 years now, GBSCDA has demonstrated proven successes in providing critical support services to patients with Sickle Cell Disease and their families throughout Greater Boston. We also have served as a vehicle for community-wide education and advocacy for this often-disenfranchised group. No other agency in Greater Boston is filling this public health and social service niche. While proud of our accomplishments, GBSCDA Board, staff and volunteers understand there is more work to be done. It is our intention to strengthen our organization by dedicating more resources to its operations, formalizing its structure and tracking its progress over time. We hope that you will partner with us in this important endeavor.

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1 Comment

Welcome Cedie, thank you for joining our web site. Your organization has done wonderful things for our Sickle Cell Community. Together we will continue to assist our community. We will partner and work to find funds for all of our underfunded groups/organizations!!!

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