Nonprofit · EIN 27-0924627
DRAVET SYNDROME FOUNDATION INC
Also known as DRAVET SYNDROME FOUNDATION
Tax-exempt · CHERRY HILL, NJ 08034
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $4,752,243 | $4,783,665 | -$31,422 | $9,833,611 | $2,652,358 | $7,181,253 |
| December 31, 2024 | 990 | $4,221,622 | $4,259,172 | -$37,550 | $8,536,916 | $1,560,863 | $6,976,053 |
| December 31, 2023 | 990 | $3,257,096 | $2,163,052 | $1,094,044 | $7,509,902 | $595,166 | $6,914,736 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $3,831,992
- Program service revenue
- $600,050
- Investment income
- $273,034
- Net income from fundraising events
- $47,167
- Other revenue
- $47,167
Expenses
- Grants and similar amounts paid
- $3,290,753
- Compensation of officers, directors and key employees
- $499,858
- Other salaries and wages
- $325,844
- Salaries, compensation and benefits (total)
- $909,231
- Professional fundraising fees
- $0
- Accounting fees
- $11,500
- Occupancy
- $4,284
- Travel
- $60,237
- Depreciation
- $2,951
- Program services (functional)
- $4,073,247
- Management and general (functional)
- $479,370
- Fundraising (functional)
- $231,048
Balance sheet and other
- Total assets, start of year
- $8,536,916
- Total assets, end of year
- $9,833,611
- Total liabilities, end of year
- $2,652,358
- Net assets, end of year
- $7,181,253
- Land, buildings and equipment
- $8,484
- Publicly traded securities
- $7,510,107
- Net assets without donor restrictions
- $6,761,560
- Net assets with donor restrictions
- $419,693
- Gross receipts
- $5,169,419
- Employees
- 13
- Volunteers
- 100
- Year formed
- 2009
- State of legal domicile
- CT
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Mary Anne Meskis | Chief Executive Officer Officer | 40 | $179,356 | $7,165 |
| Veronica Hood PhD | Chief Scientific Officer Key employee | 40 | $174,406 | $6,967 |
| Jamie Cohen CPA | Chief Financial Officer Officer | 40 | $114,984 | $4,590 |
| Ross Nicholas | Chair Trustee or director, Officer | 1 | $0 | $0 |
| Gail Farfel PhD | Vice Chair Trustee or director, Officer | 1 | $0 | $0 |
| Claire Carey | Secretary Trustee or director, Officer | 1 | $0 | $0 |
| Josh Goldman | Treasurer Trustee or director, Officer | 1 | $0 | $0 |
| Nathan Batt | Director Trustee or director, Officer | 1 | $0 | $0 |
| Bill Kirshner MD | Director Trustee or director | 1 | $0 | $0 |
| Amanda Prather PA-C | Director Trustee or director | 1 | $0 | $0 |
| Mike Chieco | Director Trustee or director | 1 | $0 | $0 |
| Ted Odlaug PhD | Director Trustee or director, Officer | 1 | $0 | $0 |
| Joseph Sullivan MD | Director Trustee or director | 1 | $0 | $0 |
990 for the year ended December 31, 2024: 13 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Mary Anne Meskis | Executive Director Officer | 40 | $172,586 |
| Veronica Hood | Scientific Director Highest-paid employee | 40 | $165,459 |
| Jamie Cohen | Finance & Program Director Officer | 40 | $108,866 |
| Ted Odlaug PhD | President Trustee or director, Officer | 1 | $0 |
| Ross Nicholas | Vice President Trustee or director, Officer | 1 | $0 |
| Claire Carey | Secretary Trustee or director, Officer | 1 | $0 |
| Josh Goldman | Treasurer Trustee or director, Officer | 1 | $0 |
| Nathan Batt | Trustee Trustee or director | 1 | $0 |
| Ashley Kerns | Trustee Trustee or director | 1 | $0 |
| Joseph Sullivan MD | Trustee Trustee or director | 1 | $0 |
| Bill Kirshner | Trustee Trustee or director | 1 | $0 |
| Gail Farfel | Trustee Trustee or director | 1 | $0 |
| Amanda Prather | Trustee Trustee or director | 1 | $0 |
990 for the year ended December 31, 2023: 14 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Mary Anne Meskis | Executive Director Officer | 40 | $156,224 |
| Veronica Hood | Scientific Director Highest-paid employee | 40 | $154,474 |
| Jamie Cohen | Chief Financial Officer Officer | 40 | $101,563 |
| Ted Odlaug PhD | President Trustee or director, Officer | 1 | $0 |
| Josh Goldman | Treasurer Trustee or director, Officer | 1 | $0 |
| Ross Nicholas | Vice President Trustee or director, Officer | 1 | $0 |
| Nathan Batt | Trustee Trustee or director | 1 | $0 |
| Claire Carey | Secretary Trustee or director, Officer | 1 | $0 |
| Ashley Kerns | Trustee Trustee or director | 1 | $0 |
| Joseph Sullivan MD | Trustee Trustee or director | 1 | $0 |
| Bill Kirshner | Trustee Trustee or director | 1 | $0 |
| Gail Farfel | Trustee Trustee or director | 1 | $0 |
| Kate Hintz | Past President Former | 1 | $0 |
| Brad Galer | Past Trustee Former | 1 | $0 |
Address and contacts
- Address (IRS master file)
- PO BOX 3026, CHERRY HILL, NJ 08034-0272
- In care of
- % LORI ODRISCOLL
- Principal officer (990 for 2025)
- Mary Anne Meskis, PO Box 3026, Cherry Hill, NJ 08002
- Signed the 990
- Ross Nicholas, Board Chair
- Phone
- (203) 392-1955
- Website
- www.dravetfoundation.org
Mission
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.
Program accomplishments
- 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 $14.1 million to 84 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 Chief Scientific Officer 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 Chief Scientific Director acts as a representative of DSF to other institutions including NIH, FDA, pharma and biotechnology companies.Expenses $3,444,887 · grants $3,262,635
- 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).Expenses $459,959 · grants $28,118 · revenue $414,125
- 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 16th annual Research Roundtable with nearly 190 participants.Expenses $168,401 · revenue $185,925
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 27-0924627
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2010
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Philanthropy, voluntarism and grantmaking foundations (T30)
- Assets (IRS master file)
- $9,833,611
- Income (IRS master file)
- $5,169,419
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $4,752,243 | $4,783,665 | $9,833,611 | IRS |
| 990 | December 2024 | $4,221,622 | $4,259,172 | $8,536,916 | XML |
| 990 | December 2023 | $3,257,096 | $2,163,052 | $7,509,902 | XML |
| 990 | December 2022 | $2,515,782 | $2,028,839 | $6,249,148 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 27-0924627).
Questions about DRAVET SYNDROME FOUNDATION INC
- What is the EIN of DRAVET SYNDROME FOUNDATION INC?
- The employer identification number (EIN) of DRAVET SYNDROME FOUNDATION INC is 27-0924627.
- Is DRAVET SYNDROME FOUNDATION INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2010.
- Are donations to DRAVET SYNDROME FOUNDATION INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does DRAVET SYNDROME FOUNDATION INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of DRAVET SYNDROME FOUNDATION INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did DRAVET SYNDROME FOUNDATION INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of DRAVET SYNDROME FOUNDATION INC?
- The 990 for the year ended December 31, 2025 names Mary Anne Meskis.
- Who are the officers and directors of DRAVET SYNDROME FOUNDATION INC?
- The 990 for the year ended December 31, 2025 lists 13 people; 3 received compensation from the organization, the highest $179,356 (Mary Anne Meskis, Chief Executive Officer).
- How much revenue does DRAVET SYNDROME FOUNDATION INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $4,752,243, expenses of $4,783,665 and total assets of $9,833,611 at year end.
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