| 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. |
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| Our Mission |
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Advocate and support research towards a cure and improve medical management of symptoms |
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Educate the medical community and general public about Shwachman-Diamond Syndrome |
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Provide emotional support to patients and their families |
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Link families through medical/family conferences to share experiences and ideas |
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Disseminate current medical information |
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Support an International and National Patient Registry and International Medical Conferences |
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| 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. |
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