New Jersey · Nonprofit
DRAVET SYNDROME FOUNDATION INC
DRAVET SYNDROME FOUNDATION INC (New Jersey) receives grants from 91 organizations whose IRS filings report $2,872,965 to it, the largest being THE JULIAN CHANG FAMILY FOUNDATION FOR DRAVET ($657,500). 43 of them have funded it in more than one year.
- Revenue FY2025
- $4.8M
- Funders on record
- 91
- Grants received
- $2.9M
- Net assets
- $7.2M
What Dravet Syndrome Foundation Inc does
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.
As stated on its FY2025 Form 990.
Programs
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.
$3,444,887 spentof which $3,262,635 as grants85% of program spendingReceiving 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…
$459,959 spentof which $28,118 as grants$414,125 earned by the program11% of program spendingDSF 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.
$168,401 spent$185,925 earned by the program4% of program spendingOther program services, not described on the e-filed return.
$0 spent0% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $4,073,247.
The organization over time
Each line starts at 100 in 2019, so what you read is the shape rather than the size: 150 means half as much again as 2019, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2024 to 2025, from $8.5M to $9.8M (+15%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2019 0% · 2020 0% · 2021 5% · 2022 0% · 2023 0% · 2024 0% · 2025 0%. Grants only. Government contracts and fees sit inside program revenue.
81% of DRAVET SYNDROME FOUNDATION INC’s revenue is contributions — about as donation-reliant as the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 7 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Mary Anne Meskis
Chief Executive Officer
Board chair
Ross Nicholas
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 5 funders to 28 funders, grant income rose $32k → $369k.
16 of 91 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 41% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of DRAVET SYNDROME FOUNDATION INC’s funders (the co-funder graph). Top 30 of 91 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
DRAVET SYNDROME FOUNDATION INC has a broad base — no single funder exceeds 23% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
49% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund DRAVET SYNDROME FOUNDATION INC.
Largest funder’s share by year: 2017 87% · 2018 27% · 2019 38% · 2020 30% · 2021 21% · 2022 39% · 2023 29% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
18% of DRAVET SYNDROME FOUNDATION INC's funders are still giving 3 years after their first grant; 47% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
DRAVET SYNDROME FOUNDATION INC draws 100% of its grant income from funders outside New Jersey, across 23 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.2M arriving through sponsors registered in 12 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
DRAVET SYNDROME FOUNDATION INC has grown faster than half of the 1,645 philanthropy nonprofits its size.
this organization peer median middle 50% of peers· 1,645 philanthropy nonprofits $1M–$10M, FY2025
Organizations like DRAVET SYNDROME FOUNDATION INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In New Jersey
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
85% of spending goes to programs.
Governance
Public support
93%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 27 states
Screen this organization
A dated, signed PDF of the compliance screen for DRAVET SYNDROME FOUNDATION INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds DRAVET SYNDROME FOUNDATION INC?
- DRAVET SYNDROME FOUNDATION INC (New Jersey) receives grants from 91 organizations whose IRS filings report $2,872,965 to it, the largest being THE JULIAN CHANG FAMILY FOUNDATION FOR DRAVET ($657,500). 43 of them have funded it in more than one year.
- How many funders does DRAVET SYNDROME FOUNDATION INC have?
- IRS filings report 91 organizations giving $2,872,965 in grants to DRAVET SYNDROME FOUNDATION INC, 43 of which have funded it in more than one year.
- Who is the largest funder of DRAVET SYNDROME FOUNDATION INC?
- THE JULIAN CHANG FAMILY FOUNDATION FOR DRAVET is the largest funder on record, with $657,500 in grants. The full list of funders is on this page.
- How can an organization like DRAVET SYNDROME FOUNDATION INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in New Jersey. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2019–2025), and the filings of 91 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing