DRAVET SYNDROME FOUNDATION INC

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 $10.5 million to 71 research endeavors. Research areas include SUDEP, gene therapy, drug discovery, screening, treatments, genetics, epidemiology and neuronal networks. DSF has also supported the development of a commercial line of iPSC cells for researchers and the biotechnology industry. 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, FDA, pharma and biotechnology companies.

Receiving a diagnosis of Dravet syndrome (DS) can be overwhelming, leaving families with many unanswered questions. To support our patient community, DSF provides a variety of educational, advocacy, and support resources: These initiatives are part of DSF's commitment to providing vital resources and fostering a strong, supportive community for those affected by Dravet syndrome. DSF Family Network: Open to any parent, legal guardian, or sibling interested in our advocacy services and programs, the Family Network keeps members informed about new advocacy tools, clinical trials, educational opportunities, and fundraising events. It also includes moderated private Facebook support groups for parents and caregivers of individuals with Dravet syndrome. Membership is limited to those legally responsible for making medical decisions for the patient. In 2024, 347 people joined the Family Network. Newly Diagnosed Kits: DSF provides newly diagnosed families with a kit that includes a guidebook for navigating life after diagnosis, a medication bag, and other materials to ensure they have the knowledge and tools needed for their child's care. In 2024, DSF distributed 131 kits. Patient Assistance Grants: The DSF Patient Assistance Grant Program offers financial support to patients with Dravet syndrome and related SCN1A epilepsies for medical equipment, therapy devices, and educational aids not covered by private insurance or other programs. This program is available to all patients worldwide who are members of the DSF Family Network. Since 2009, DSF has awarded $279,000 to 249 families. Birthday Buddies: Families can register their loved one with Dravet syndrome to receive a birthday card and small gift from DSF's mascot, Aurora, around their birthday. In 2024, DSF sent 640 gifts. Super Siblings Club: DSF provides a day camp at our biennial conference and annual Day of Dravet workshops for siblings of individuals with Dravet syndrome. These events offer a fun and supportive environment for siblings to connect, express their feelings, and bond with others facing similar challenges. Bereavement Support: Losing a loved one, especially a child, is profoundly painful. DSF offers resources for coping with grief, including a Bereavement Support Group and Remembrance Wall. Legislative Advocacy Program: We are committed to keeping our patient community informed about legislative actions affecting Medicaid and rare disease research, which are essential for maintaining access to care and driving advancements in treatment for Dravet syndrome. By ensuring our constituents have accurate and nonpartisan information, they can advocate for their loved one and family effectively. Biennial Conference: This 3-day event brings together families, caregivers, clinicians, researchers, and pharmaceutical professionals to collaborate on improving the lives of those with Dravet syndrome. The conference features presentations on the latest research and patient care, fostering new relationships and collaborations. Over 500 people attended the 2024 conference. Day of Dravet Workshops: Held in alternating years from the biennial conference, these workshops offer families the opportunity to learn about research, treatment options, and connect with others. Sessions are led by community experts, including fellow parents. The workshops also include our VIP Sib Camp and activities for patients. In 2023, over 500 attendees participated at workshops in Colorado (Denver), Florida (Sanford), Connecticut (Stamford), California (Anaheim), and Kentucky (Newport).