Three simple words make up DSF’s new tagline: Community. Research. Progress. We believe our new tagline is an external expression of our purpose and all that DSF has accomplished.
Because rare diseases, such as Dravet syndrome, affect a small number of people relative to diseases such as cancer or diabetes, they are often considered lower priority and funding is challenging. Since the inception of DSF, our top priority has been to fund research. While we have been fortunate to have interest in our disease from biopharma companies, it is important to note that while these companies have supported some of DSF’s work through educational opportunities for conferences, resources, and advocacy programs, they do not contribute to any of the research efforts of DSF.
The $6.4M in research grants that DSF has awarded is because of our direct fundraising efforts – ranging from direct donations, walks, galas, facebook fundraisers, and families hosting a variety of unique fundraising events. Every dollar matters. Our community continues to give, raise funds, and bring awareness for more research because it’s important to our patient families to find a cure:
- DSF has directed over $6.4M to research
- DSF-funded researchers have subsequently received >$23M in NIH-level funding for projects related to DS
- DSF specifically directed $545K to support 13 trainees. Training the next generation of investigators is key to assuring the future of Dravet syndrome research.
- 4 are now in professorial positions (research/clinical practice)
- 2 secured subsequent NIH funding ($1.1M)
- 6 are still in active research fellowships
- 3 are in biotech or scientific support roles
- Research publication rates have increased
- 71% of grants have resulted in publications
- At least 49 publications have been supported directly by DSF
- 3 medications with FDA approved indication for DS
- 6 interventional clinical trials currently enrolling in US
- Disease modifying therapies are on the horizon
Be a part of our community – get engaged and stay involved with DSF. Your continued support means a lot and you are making great change for families living with Dravet syndrome.