It all started in 2009, when four parents came together looking for connection with one another and a desire to improve outcomes for their own children who had been diagnosed with Dravet syndrome (DS). Since then, there have been many exciting advancements in the field of DS, many thanks in part to DSF. We have positioned ourselves as a convener to bring together patient families, clinicians, researchers, and industry members to help move the field forward and we are proud to be the largest nongovernmental funder of Dravet syndrome research, worldwide.
We are closer than ever before to therapies that are truly disease-modifying; therapies that will address the cause of Dravet syndrome and have the potential to improve the spectrum of symptoms that patients experience. There are many animal and cell models that allow researchers to study Dravet syndrome, and DSF is working with researchers to close final gaps in the development of and access to these research tools. Our understanding of the SCN1A gene and the mutations that cause Dravet syndrome has expanded, leading to more precise diagnostics as well as uncovering how this impacts brain development and spurring novel avenues to genetic-based therapies. We continue to build on the knowledge that exists of the progression of symptoms in Dravet syndrome, and DSF is investing in efforts to more closely characterize the clinical picture with the intention that this will improve clinical recognition, outcomes, and treatments. Â
With these exciting advancements, we are proud to share with you our new 5-year strategic plan, which will guide the efforts of DSF through 2028. It includes strategic focus areas that were identified by our community stakeholders, with objectives developed to address the four priorities outlined in our mission: 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.Â
Community. Research. Progress.
