Through your support, DSF continues to drive research, advocate for our patient community, and provide education, resources, and support for those living with Dravet syndrome. Learn more about our programs and how your donations impact the Dravet syndrome community.
Research Grants
DSF’s Research Grant Program funds clinical, translational, and basic science research projects that specifically focus on Dravet syndrome (DS). This funding allows important questions to be explored that can help expand our understanding of DS and improve treatments and outcomes for patients. DSF Research Grants fill important funding gaps, allowing researchers to perform pilot experiments to gather more data to submit for subsequent governmental funding, funding special interest projects that may not be as prioritized through broader funding mechanisms, and supporting early-career investigators to focus their work on DS. Since 2009, DSF has awarded more than $9.1M through 62 projects, making DSF the largest nongovernmental funder of DS-specific research, worldwide.
Research Roundtable
DSF’s Annual Research Roundtable is a unique event that brings together leading experts in Dravet syndrome from across academic research, clinical care, and industry to present cutting-edge research advancements. The meeting allows for the unique opportunity for expert discussion of the overall ‘research roadmap,’ examining broadly how far our understanding of Dravet syndrome has come, identifying outstanding gaps in current knowledge, and discussing potential solutions to overcome those gaps.
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.
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.
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.
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 also 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.
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.
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.
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.
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.
