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Published byBeryl Butler Modified over 6 years ago
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Founded in 2016, The Wiedemann-Steiner Syndrome (WSS) Foundation serves as a cornerstone of knowledge for individuals affected by the syndrome, their families, physicians and researchers. Together we support and advocate for ongoing research and help those diagnosed reach their greatest potential.
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The Foundation’s initial monetary goal is to raise $250,000 by the end of 2019.
Since its inception, the Foundation’s supporters have contributed over $60,000 to the Foundation
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That is nearly 25% of our initial monetary goal
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5% of the WSS Foundation’s annual net funds will be donated to non-profits that serve those undiagnosed and to non-profits that serve those diagnosed with rare diseases.
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2017’s recipients will be the National Organization for Rare Diseases and the Kabuki Syndrome Foundation.
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What are the Foundation’s Next Steps?
Develop a Scientific Advisory Board Grant two, $7,500 micro-grants focusing on feeding and digestion and cognitive development Grant one, $200,000 grant focusing on WSS as a whole Establish Internationally WSS Family Conference 2019 while encouraging and supporting regional meet-ups in between
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