This is an exciting time of the year for DSF and our community – research grant applications were due a few weeks ago and our Scientific Advisory Board has begun reviewing this year’s applications. Announcements of our 2019 grant awardees will be made in early December, so stay tuned! 

The primary reason DSF came into existence was that the founding members, who were all parents of children with Dravet syndrome (DS), discovered that there was no significant research happening in the field of DS in 2009. Diseases that impact a larger portion of the general public are more likely to receive funding allocation, so researchers specializing in a rare disease like DS can have a difficult time obtaining funding from governmental agencies such as the National Institute of Health (NIH) for their work. 

Patients and patient advocacy groups like DSF are the key. It takes leadership to gather the community together and drive the process. We had a voice that could and should be heard, and our role has been crucial in not only raising awareness of the condition, but in guaranteeing that there was funding available to develop research and allow scientists to gather preliminary results that in turn could attract major research funding. We saw that a crucial component of our success would be in establishing strong connections with physicians, researchers, and our patient community. And, we saw that we needed to be proactive if the work was going to get done.

To help researchers with funding needs, we established the DSF Research Grant Program, which includes:

  • Research Grant Award – this $150,000, 2-year award is intended for established, experienced, independent investigators affiliated with a research or academic institution whose proposed projects investigate hypotheses directly related to DS.
  • Postdoctoral Fellowship  – this $50,000, 1-year award is designed to support early-career researchers under the mentorship of an independent investigator.
  • Clinician-Researcher Award – this $150,000, 2-year award supports hypothesis-driven clinical research projects that have significant potential to advance our understanding of DS; slow or halt the progression of the disease, characteristics, or comorbidities of the disease; and/or reduce mortality.
  • Clinical Research Grant Award – beginning in 2020, this new $150,000, 2-year award will support projects that help us better understand all areas of DS, from basic mechanisms to actual intervention in seizures, disease progression, and a host of comorbidities by supporting clinicians, their research assistants, and the institutional staff/materials required in clinical studies.
  • Request for Applications (RFAs) – DSF occasionally issues RFAs for areas of interest. These notices include research objectives and project scope. Join our email list to receive updates.

DSF did not plan to grow to the level we have. In the beginning, we were just four desperate parents who wanted to feel that we were doing something to help our own children and offer them a better quality of life. And, we soon learned that other affected families felt the same way. We never imagined we would have the support to award over $4.2M in research in less than 10 years.

It was a series of opportunities that presented themselves to a motivated and engaged community that we knew we had to take advantage of and that have put us in the position we are in today. None of this would be possible without the mutual support and many efforts of our patients and professionals and other stakeholders in our community – educating about DS, assuring early diagnosis and appropriate care, providing resources for research, and so on. It is only through this continued collaborative and research support that we can continue to make headway at the breakneck pace we have thus far.