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What is SDSF?
Our History
Founded in 1994 by Joan Mowery, the mother of an SDS patient, Shwachman-Diamond Syndrome Foundation is a national, nonprofit, patient advocacy organization. Our goals are to advocate and support research towards a cure and to improve medical management of symptoms, as well as to link families for emotional support and supply them with the most current medical information available. This information is provided with the expertise and cooperation of our professional medical advisory board.
Our Mission
Advocate and support research towards a cure and improve medical management of symptoms
Educate the medical community and general public about Shwachman-Diamond Syndrome
Provide emotional support to patients and their families
Link families through medical/family conferences to share experiences and ideas
Disseminate current medical information
Support an International and National Patient Registry and International Medical Conferences

Our Budget
SDSF spends approximately 75% of its budget on research, and the the remaining 25% on family support, conferences (scientific and family, administrative, insurance, payroll accounting and fundraising). According to the IRS, SDSF spends only 7% of it's budget on administrative costs with 93% of the budget going directly to research, new family packets, family and scientific conferences, newsletters, brochures and other items that directly benefit our SDS community. SDSF is professinoally audited every year by Stokes & Visca & Co. LLP.