Dravet Syndrome Foundation Inc

What it reported doing in 2025

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 2025, 280 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 2025, DSF distributed 115 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 $306,000 to 265 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 2025, DSF sent 677 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 2025, 470 attendees, representing 123 families participated at workshops in Texas (San Antonio), Tennessee (Sevierville), Washington (Tacoma), Illinois (Gurnee), and Pennsylvania (Hershey).

Financial Efficiency

• Mission deployment rate: 86.5%; rating input score 87
• Program expense ratio: 85.1%; rating input score 85
• Fundraising efficiency: $16.59 raised per $1 spent on fundraising; rating input score 53; 53rd percentile among comparable filings

Transparency & Controls

• Consistency checks: 93.8%; rating input score 94; 21st percentile among comparable filings
• Pay-setting controls: 5 of 6 controls in place; rating input score 83
  • Compensation committee: Pass
  • Independent consultant: Pass
  • Other Form 990s reviewed: Pass
  • Written employment contract: Missing
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: 2 of 8 controls in place; rating input score 25
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Fail
  • May suspend future funding: Fail
  • Requires financial reports: Fail
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• Grant itemization coverage: 98.9%; rating input score 99; 42nd percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -0.7%; rating input score 24; 24th percentile among comparable filings
• Total-asset coverage ratio: 2.06; rating input score 58; 58th percentile among comparable filings
• Liabilities to assets ratio: 0.27; rating input score 29; 29th percentile among comparable filings
• Officer compensation ratio: 10.2%; rating input score 33; 33rd percentile among comparable filings

Growth

• Program expense growth: 30.6% per year; rating input score 100; 92nd percentile among comparable filings
• Revenue growth: 10.2% per year; rating input score 100; 67th percentile among comparable filings
• Asset growth: 10.7% per year; rating input score 100; 60th percentile among comparable filings