Dravet Syndrome Foundation, Inc.
Rating: 4.98 stars 44 reviews
Issues: Health, Philanthropy
Location: PO Box 16536 West Haven CT 06516 USA
Results: To date, DSF has awarded over $1M in Dravet-specific research grants, more than any other nonprofit organization. Even though research might not move as quickly as we as parents would like to see, we don't want lack of funding to be slowing down the process.
Target demographics: We collaborate globally with researchers, geneticists, clinicians, and other professionals with an interest in Dravet syndrome and related epilepies, as well as serving patients and familes across the globe.
Programs: •Research Grant Program – This program offers grants for research directly related to Dravet syndrome and associated epilepsies. Our research grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental funding. Research applications will be judged principally on novelty of the hypotheses, innovative approaches with a direct relevance and application to Dravet syndrome and related epilepsies, scientific quality, strength of approach, and likelihood of success. •International Ion Channel Epilepsy Patient Registry (IICEPR)– This registry (co-funded by the DSF & ICE Alliance) is owned by University of Michigan and Miami Children’s Hospital, but will be available to all interested researchers. It will collect basic information and genetic test results of individuals with Dravet syndrome and related epilepsies worldwide. The establishment of this registry will expedite future clinical trials and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution of any new information that may benefit patients and their families. •DSF Annual Research Roundtable – This annual meeting allows researchers, geneticists, neurologists and other professionals with a strong interest in Dravet syndrome and related epilepsies establish a “research roadmap”. By allowing this consortium of specialists to establish a plan, the DSF can facilitate the development and implementation of better treatments by funding research projects that address the critical challenges of this syndrome and which will offer the most promising breakthroughs at the fastest pace possible. •International Patient Assistance Grant (PAG) Program - This program offers grants to patients with Dravet syndrome and associated epilepsies for necessary medical expenses associated with these conditions that are not covered through private insurance or other assistance programs. Three percent of donations, after expenses, are allocated to this program.
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