DRAVET SYNDROME FOUNDATION INC
PO Box 3026, Cherry Hill, NJ 08034 www.dravetfoundation.org

---

Organizations Filed Purposes: The mission of the Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome & related epilepsies; support & fund research; increase awareness; & provide support to affected individuals & families. We understand the ongoing need to fund innovative research, the urgency in finding better treatments, the motivation of our donors to make an impact specifically in the fields of Dravet syndrome and related epilepsies, the importance of transparency and accountability of not only our organization, but the researchers that we fund, and the need for global collaboration in order to find a cure.

The mission of the Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome & related epilepsies; support & fund research; increase awareness; & provide support to affected individuals & families.

DSF funds research for better treatments and a cure for Dravet syndrome and related epilepsies by awarding research grants to qualified scientists and clinicians. These grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental funding. Since 2009, DSF has awarded over $4.5 million to 41 research endeavors. Research areas include SUDEP, gene therapy, drug discovery, screening, treatments, genetics, epidemiology and neuronal networks. In 2020, DSF hired a Scientific Director to serve as the liaison between the medical/scientific community and DSF, developing strategies to support research, manage DSF's involvement in projects, and move projects forward with assistance in project management, manuscript preparation, and other writing opportunities. The Scientific Coordinator acts as a representative of DSF to other institutions including NIH, PDA, pharma and biotechnology companies.

Receiving a diagnosis of Dravet syndrome can be overwhelming and may leave a family with many unanswered questions. DSF produces a biennial professional and family conference designed to unite community stakeholders to address these questions - families, caregivers, clinicians, researchers, and other professionals. Our 2018 conference welcomed almost 400 parents, children and professionals. The 3-day event featured over 30 speakers who presented on current research, co-morbidities, best care practices, and daily living challenges. Due to the pandemic, our live in-person biennial conference for June 2020 had to be postponed. In its place, we offered a virtual webinar series on new treatments and current research to bridge the educational gap until we can safely meet in person again. In 2017 the DSF Family Network was established to provide regional support to families. As part of this initiative, 5 educational workshops are held across the country each year. Also due to the pandemic, our usual 5 Day of Dravet regional workshops were changed into a single one-day virtual event to connect our caregivers and families and discuss top concerns in the patient community. In addition to these conferences and workshops, DSF has established an international patient assistance grant program to help patients receive medical equipment, therapy devices, and education aides associated with Dravet syndrome that are not covered through private insurance or other assistance programs. Since 2009, DSF has awarded over $178k in assistance to families.

DSF produces an annual research roundtable meeting to provide opportunity for researchers and clinicians to collaborate and discuss better treatment options and a roadmap toward a cure and how to best facilitate both. This meeting started in 2010 as a brainstorming session for the few researchers working on Dravet syndrome. DSF hosted its 11th annual Research Roundtable virtually, and had our largest attendance yet, with over 180participants. In 2020, to address and unmet need in education for healthcare professionals who work with patients with Dravet syndrome, DSF developed a webinar series, Listen+Learn. This CME-accredited series features experts from DSF's Medical Advisory Board who provide guidance and share current treatment approaches with medical professionals who care for patients with Dravet syndrome.

---

---

Data for this page was sourced from XML published by IRS (public 990 form dataset) from: https://s3.amazonaws.com/irs-form-990/202131239349301903_public.xml