When a group of parents started the Dravet Syndrome Foundation in 2009, there were no treatments specifically for Dravet syndrome. These parents set their sights high — to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure.
In the ensuing years, the fundraising and commitment of the Dravet syndrome community has enabled DSF to support fundamental research in the laboratory that has led to groundbreaking discoveries. By expanding our knowledge of the underlying biology of the disease, researchers have paved the way for creating new treatments.
DSF’s steadfast commitment to advancing Dravet syndrome research, as well as our community’s engagement throughout the clinical trial and drug development process has helped enable three new treatments for the disease, with several additional clinical trials already underway or soon starting. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of Diacomit® (stiripentol) Epidolex® (cannabidiol), and Fintepla® (fenfluramine).
The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.