DSF was built around the need to fund Dravet syndrome-specific research in order to assure better treatment options and the best quality of life for our patient community. The founding members discovered that epilepsy research in general was underfunded and by the time you funneled down to a rare epilepsy, such as Dravet syndrome, there was very little that was happening. It was apparent that the patient community would have to drive the effort if we wanted more research to happen.
Our community was fortunate to have the guidance of Jack Parent, MD, early in the development of DSF. He helped us to assemble our Scientific Advisory Board (SAB) who have in turn shared their expertise to move the field of Dravet syndrome forward. Not only does the SAB guide us in developing our research strategy, but they also review and score the grant applications that come in as a part of DSF’s Research Grant Program.
Our Research Grant Program offers funding for research directly related to Dravet syndrome and offers four different funding opportunities: Research Grants, Clinical Research Grants, Postdoctoral Fellowships, and Clinician-Researcher Awards. These grants are important because they act as a springboard in funding initial research. The results extracted from this type of research may help bring untested research to the point that it can qualify for larger governmental funding. Research applications are 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.
This year we took another important step to assure that we were positioning the Dravet syndrome community in a way that moves science and new treatments forward at the fastest pace possible. In June, we welcomed Veronica Hood, PhD, into the position of DSF Research Coordinator. Dr. Hood’s role includes overseeing our Research Grant Program; expanding our reach to labs and researchers; and serving as a liaison for our patient community, disseminating information and answering their questions.
Dr. Hood will be announcing the 2020 DSF Research Grant Awards in just two weeks. Make sure to check our blog to learn about our new awards on Friday, December 8th. After this year’s awards, DSF will have awarded just shy of $5M since 2009. This is the power of our community in action – thank you for being a part of moving our mission forward.