Dravet Syndrome Foundation

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 $9.1 million to 66 research endeavors. Research areas include SUDEP, gene therapy, drug discovery, screening, treatments, genetics, epidemiology and neuronal networks. DSF's Scientific Director serves 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 Director acts as a representative of DSF to other institutions including NIH, PDA, pharma and biotechnology companies.

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 14th annual Research Roundtable, and had our largest attendance yet, with over 190 participants. In 2023, DSF organized its inaugural online gathering for our Comprehensive Care Centers. During this event, we had the chance to educate not just neurologists/epileptologists about our patient programs and resources, but also nurses, social workers, and other vital support staff. This initiative aims to ensure that patient families receive comprehensive information on resources essential for the optimal care of their loved ones, while also connecting them to a supportive patient community.

Receiving a diagnosis of Dravet syndrome (DS) can be overwhelming and may leave a family with many unanswered questions. 1. DSF Family Network: The DSF Family Network is open to any parent/legal guardian or sibling that is interested in accessing our advocacy services and programs. By joining the family network, community members can stay up to date on new advocacy resources, clinical trials, and educational and fundraising events. As part of the family network, DSF also offers moderated private support groups on Facebook for parents and caregivers of loved ones with Dravet syndrome. We limit membership in these support groups to parents and caregivers who are legally responsible for making medical decisions for the Dravet patient. In 2023, 385 people registered for the family network. 2. Newly Diagnosed Kits: DSF offers a kit for newly diagnosed families that includes a guidebook for families after diagnosis, as well as a medication bag and other materials to assure that families have the knowledge, tools, and resources they need for their child's care. In 2023, DSF mailed 131 kits. 3. Patient Assistance Grants: The DSF Patient Assistance Grant Program offers grants to patients with Dravet syndrome and related SCN1A epilepsies for necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs. This program is open to all patients, worldwide, who are members of the DSF Family Network. DSF has awarded 234 families a total of $258k since 2009. 4. Birthday Buddies: Register your loved one with Dravet syndrome and around their birthday they will receive a birthday card and a small gift from DSF's mascot, Aurora! DSF mailed 583 gifts in 2023. 5. Super Siblings Club: To help meet the needs of Dravet siblings, DSF offers a day camp to connect siblings in-person at our biennial conference and annual Day of Dravet workshops. These opportunities address the needs of siblings, within a nurturing and fun environment. Multidisciplinary recreational activities help them to better understand their surroundings, express their feelings, and meet and bond with peers who are experiencing similar circumstances. 6. Bereavement Support: Losing someone you love or care about, particularly a child, is very painful. DSF offers information and resources for coping with grief and loss including a Bereavement Support Group and Remembrance Wall. 7. Biennial Conference: This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome - including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals. DSF welcomed over 300 people at the 2022 conference. 8. Day of Dravet Workshops: Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF's shared vision for a better outcome for those affected by Dravet syndrome. They take place on opposite years of our biennial conference. Workshops also feature our VIP Sib Camp and activities for patients. Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be helpful for your loved one's care. Sessions are presented by community experts - including other parents. This is a chance for patient families to connect with others in their region and have the rare opportunity for community building and connection. In 2023 over 500 attendees gathered at workshops in Colorado (Denver), Florida (Sanford), Connecticut (Stamford), California (Anaheim), and Kentucky (Newport).