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Dravet Syndrome Foundation Inc at a glanceAlso receives grants: funding profile →

· Public charity

Dravet Syndrome Foundation Inc

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.

$3.3M
Granted FY2025still arriving
9
Grants FY2025still arriving
8
States reached
$779k
Largest
01What it fundsRead
02The needRead
03Its granteesRead
04Its fieldRead
05Through PlinthRead
01What it funds
01100% classified

What it funded, over time

Every grant placed by its stated purpose and the recipient’s mission, by year, FY2019 to 2025.

Health$6.5MScience & Tech$437k
02FY2025 · 9 grants

Where the money goes

Grants by size, and the largest recipients.

How this is measured
The 9 grants below total $2,727,635, the rows itemized in this filing. The $3,290,753 headline is the total grant expense on the return; the other $563,118 is giving the schedule does not break out (grants under the $5,000 itemization floor, grants to individuals, grants on other schedules). Every figure below describes the itemized rows only.

By grant size · FY2025

  • Under $10k1 grant · $9k
  • $50k–250k4 grants · $518k
  • $250k+4 grants · $2.2M
$240,000
Median grant
8
States reached
$9.8M
Total assets
Largest grants
RecipientAmount
Regents of the University of Michigan$779,250
Regents of the University of Colorado$662,231
Allen Institute$449,785
The Board of Trustees of the Leland Stanford Junior University$309,500
Children's Hospital of Pennsylvania$240,000
The Research Foundation for the State University of New York$100,000
The Broad Institute of MIT and Harvard$100,000
The Children's Hospital Corporation dba Boston Children's Hospital$77,500
Coriell Institute for Medical Research$9,369
02The need
03

Does the money reach high-need areas?

Each grant placed by the hardship in its grantee’s ZIP, against the area’s typical level.

show:

Dollar for dollar, its grants (FY19–25) land where the poverty rate runs at 14%, against an area that typically sits at 10%. 84% of its dollars go to grantees based in above-average-need neighborhoods. Most of its grants land in higher-need ZIPs.

area typical 10%The Broad Institute of MIT and Harvard: $100k → 8%The Children's Hospital Corporation dba Boston Children's Hospital: $78k → 16%Children's Hospital of Philadelphia: $1.0M → 22%The Board of Trustees of the Leland Stanford Junior University: $310k → 8%The Research Foundation for the State University of New York: $150k → 14%The University of Texas at Austin: $165k → 10%Children's Research Institute: $150k → 14%Camp Boggy Creek: $10k → 10%Regents of the University of Michigan: $779k → 14%The Washington University: $150k → 21%Vanderbilt University Medical Center: $165k → 14%Brown University: $250k → 14%University of Utah: $165k → 8%University of Colorado Denver: $150k → 10%Regents of the University of Colorado: $662k → 12%The Ohio State University: $150k → 15%Case Western Reserve University: $216k → 17%Allen Institute: $450k → 9%Northwestern University: $165k → 14%Coriell Institute for Medical Research: $13k → 12%Virginia Polytechnic Institute: $150k → 21%Children's Hospital of Pennsylvania: $240k → 22%The Research Foundation for the State University of New York: $100k → 14%The University of Texas at Austin: $50k → 10%Regents Of The University Of Michigan: $500k → 14%The University of Utah: $75k → 8%University of Colorado Denver: $75k → 10%Northwestern University: $150k → 14%Coriell Institute for Medical Research: $9k → 12%The Children's Hospital of Philadelphia: $50k → 22%Regents Of The University Of Michigan: $75k → 14%University of Colorado Denver: $50k → 10%Ann & Robert H Lurie Children's Hospital: $11k → 14%The Children's Hospital of Philadelphia: $25k → 22%The Regents of the University of Michigan: $50k → 14%Children's Hospital of Philadelphia: $75k → 22%0%20%40%50%more need →
grant to an above-average-need area below average· circle size = grant amount
How this is measured
Matched: human-services grants are those whose grantee’s IRS cause code is Human Services. Placed by people below the poverty line in the grantee’s ZIP, averaged from the tracts in that ZIP.

Which US states its grants reach

WA
MN
IL
MI
NY
MA
OH
PA
NJ
RI
CA
UT
CO
MO
VA
TN
DC
TX
FL

Grants abroad, by region: $485k on the FY2025 return

Schedule F, as filed: 2 regions. The IRS asks for region and purpose, not the recipient, so no country or grantee can be named here.

Europe (including Iceland and Greenland)$355k · 73% · 1 grant

Stated purpose: 1. Leiden University Medical Center - Research Grant: Neurophysiological Characterization of the Therapeutic Effect of Exogenous Nav1.1 Channels - $110,000. 2.Royal College of Surgeons Ireland - Postdoctoral Fellowship: Multi-Target Strategy for Dravet Syndrome: Enhancing Sodium Channels and GABA Receptors via miRNA Inhibition - $75,000. 3. Institut de Génétique Moléculaire de Montpellier, in conjunction with Tel Aviv University and The Children's Hospital of Philadelphia - Transformational Science Grant: Molecular Characterization of the Therapeutic Effect of Exogenous Nav1.1 - $170,000. Details for each of these projects can be found at https://dravetfoundation.org/dsf-funded-research/

Middle East and North Africa$130k · 27% · 1 grant

Stated purpose: Tel Aviv University in conjunction with Institut de Génétique Moléculaire de Montpellier and The Children's Hospital of Philadelphia - Transformational Science Grant: Molecular Characterization of the Therapeutic Effect of Exogenous Nav1.1. This study investigates how introducing functional Nav1.1 sodium channels affects cellular and molecular processes. The goal is to better understand how restoring this protein alters neuronal signaling, protein interactions, and downstream pathways. By mapping these effects, researchers aim to identify mechanisms of therapeutic benefit and potential biomarkers of response. Insights from this work will guide optimization of Nav1.1-based therapies and support the development of more targeted and effective treatment strategies.

How this is measured
US grants placed by each grantee’s ZIP, which can differ from where services are delivered. Need from public data (U.S. Census/ACS, CDC PLACES, Eviction Lab, USDA), shown as context about the area, never attributed to the funder’s giving. Grants abroad on Schedule F are filed by region, purpose and amount with no recipient name, so they are shown by region and cannot be placed on the country map or matched to a grantee.
04

Where the work is directed

The same grants placed two ways: where each recipient sits, and where its stated purpose sends the money.

About 19% of Dravet Syndrome Foundation Inc’s grant dollars are earmarked for a different county than the recipient’s own address.

Dravet Syndrome Foundation Inclessmore of its giving
Placed by recipient address · 25% directed abroad (not shown)
How this is measured
Recipient view: each grant at its grantee’s ZIP, mapped to a county. Directed view: each grant at the county its stated purpose names, falling back to the recipient’s county when the purpose names no place; US grants only. A county shows only if it carries the top 95% of that view’s dollars. Purposes are read from the funder’s own 990 grant descriptions.
03Its grantees
repeat funding

Who it funds again

Organizations funded in more than one year, against those funded once.

75%of every dollar goes to organizations it has funded before.
$4.8M · 8 repeat orgs$1.6M to everyone else

8 repeat relationships: 5 still active in FY2025, 3 since wound down; 3 grantees were first funded in FY2025 (too recent to call).

How the two cohorts compare

Re-uppedFunded once

Organizations

8
8

Total granted

$4.8M
$1.0M

Median revenue growth · since first grant

+34%
+35%

Still filing today

50%
75%

New vs renewed · share of each year

In FY2025, 74% of grant dollars renewed an existing relationship; $627k went to new ones.

50%100%’19’20’21’22’23’24’25
RenewedFirst-time

Where new relationships form · theme of each grantee’s first grant

’19’20’21’22’23’24’25
HealthEducationRecreation & SportsScience & TechOther
How this is measured
First-time means a grantee’s first year in the filing window; renewed means funded in an earlier year too. The renewed share climbs naturally as a portfolio matures, so the signal is a year that bucks it (a wave of new grantees). The earliest year is left-censored: relationships that predate the data read as new. Theme is the grantee’s IRS cause.

Backed again, and grew

  • TC
    THE CHILDREN'S HOSPITAL OF PHILADELPHIA
    3× · 2021–2025 · $1.4M · revenue +45%
  • Northwestern University
    2× · 2019–2020 · $315k · revenue +34%
  • TR
    The Research Foundation for The State University of New York
    2× · 2023–2025 · $250k · revenue +33%

Funded once

  • CASE WESTERN RESERVE UNIVERSITY
    one grant, 2023 · $216k · revenue +14%
  • VU
    Vanderbilt University Medical Centergraduated
    one grant, 2023 · $165k · revenue +25%
  • VP
    VIRGINIA POLYTECHNIC INSTITUTE & STATE UNIVERSITY
    one grant, 2019 · $150k
How this is measured

Repeat means funded in two or more distinct years. Growth and survival are read from each grantee’s own subsequent IRS filings.

04Its field

Closest unfunded matches

The nonprofits that most resemble its grantees but are not funded by it, scored along the direction from the rest of the field toward the portfolio. A resemblance in what they say they do, not a recommendation.

1
New York University

Nyu is a private university with approximately 60,000 matriculating students in 20 schools and institutes. nyu's primary missions are education, research and scholarship, and patient care.

Education
2
Rhode Island Hospital

As a founding hospital in the brown university health system, rih is committed to its mission: delivering health with care.

Health
3
Rush University Medical Center

The mission of Rush is to improve the health of the individuals and diverse communities we serve through the integration of outstanding patient care, education, research and community partnerships.

Health
4
Fred Hutchinson Cancer Center

Fred hutch cancer center ("fred hutch") unites innovative research and compassionate care to prevent and eliminate cancer and infectious disease. continued on schedule o

Health
5
University of Minnesota Physicians

University of minnesota physicians serves as the integrated group practice for the university of minnesota medical school full-time faculty to provide the highest quality healthcare to patients and their families.university of minnesota…

Health
6
Hugo W Moser Research Institute At Kennedy Krieger Inc

The hugo w. moser research institute at kennedy krieger, inc. (the "research institute") is an internationally recognized research facility finding answers to problems and injuries that affect a child's developing brain. researchers have…

Science & Tech
7
Albany College of Pharmacy and Health Sciences

We educate the next generation of leaders to improve the health of our society.

Education
8
University of Miami

See Form 990, Part I, Line 1, Description of Organization Mission.

Education
9
University of Southern California

The central mission of the university of southern california is the development of human beings and society as a whole through the cultivation and enrichment of the human mind and spirit. the principal means by which our mission is…

Education
10
Texas Children's Hospital

Texas children's hospital, headquartered in houston, texas, is a not-for-profit organization whose mission is to create a healthier future for children and women throughout our global community by leading in patient care, education and…

Health
11
Cedars-Sinai Medical Center

As a leading academic healthcare organization, our mission is to elevate the health status of the communities we serve.(see schedule o for continuation)(continued)-we deliver exceptional healthcare enhanced by research and education-we…

Health
12
Drexel University

Drexel university fulfills its founder's vision of preparing each new generation of students for productive professional and civic lives while also focusing its collective expertise on solving society's greatest problems. drexel is an…

Education
How this is measured
The grantee most central to the portfolio’s shape is Brown University; the most unlike its peers is The Boggy Creek Gang Inc. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.
05the grantee network

16 grantees tracked through their own filings, 2017–2025.

Each grant beside the grantee’s revenue from every source, year by year.

How this is measured

Counted here: distinct organizations funded across 2017 to 2025, not grant rows in a single year, so this will not match the grant count on the cover. 16 of the 22 grantees resolved in that span have returns of their own we could reconcile.

Each grantee is resolved to its own IRS returns. Association, dated; never a causal claim.

0
Load-bearing (≥25% of a budget)
2
Early backer (in before they grew)
16/16
Grantees still filing
12/16
Grew since first funded

Where the money sits, by cause and then by grantee

REGENTS OF THE UNIVERSITY OF MICHIGAN: $1,404,250 · OtherREGENTS OF THE UNIVERSITY OF MICHIGANREGENTS OF THE UNIVERSITY OF COLORADO: $937,231 · OtherREGENTS OF THE UNIVERSITY OF COLORADOUNIVERSITY OF UTAH: $239,671 · OtherUNIVERSITY OF UTAHUNIVERSITY OF TEXAS: $215,000 · OtherUNIVERSITY OF TEXASVIRGINIA POLYTECHNIC INSTITUTE & STATE UNIVERSITY: $150,000 · OtherTHE OHIO STATE UNIVERSITY: $150,000 · OtherTHE CHILDREN'S HOSPITAL OF PHILADELPHIA: $1,389,900 · HealthTHE CHILDREN'S HOSPITAL OF PHILADELPHI…ALLEN INSTITUTE: $449,785 · HealthALLEN INSTITUTEVanderbilt University Medical Center: $165,000 · HealthVanderbilt University Medical CenterCHILDREN'S RESEARCH INSTITUTE: $150,000 · HealthCHILDREN'S RESEARCH INSTITUTEThe Broad Institute Inc: $100,000 · Health+4 more: $119,112 · HealthTHE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY: $309,500 · EducationTHE BOARD OF TR…The Research Foundation for The State University of New York: $250,000 · EducationThe Research Fo…CASE WESTERN RESERVE UNIVERSITY: $216,166 · EducationCASE WESTERN RE…WASHINGTON UNIVERSITY: $150,000 · EducationWASHINGTON UNIV…Northwestern University: $315,000 · Recreation & SportsBROWN UNIVERSITY: $250,000 · Community ImprovementCORIELL INSTITUTE FOR MEDICAL RESEARCH INC: $21,986 · Science & Tech
Other$3,096,152Health$2,373,797Education$925,666Recreation & Sports$315,000Community Improvement$250,000Science & Tech$21,986

Each grantee by its size and the funder’s share of it; top left is load-bearing

25%50%75%100%$100Mgrantee revenue →↑ funder's share of their budgetTHE CHILDREN'S HOSPITAL OF PHILADELPHIA: $1,389,900 over 3y, 0.0% of budgetNorthwestern University: $315,000 over 2y, 0.0% of budgetBROWN UNIVERSITY: $250,000 over 1y, 0.0% of budgetThe Research Foundation for The State University of New York: $250,000 over 2y, 0.0% of budgetCASE WESTERN RESERVE UNIVERSITY: $216,166 over 1y, 0.0% of budgetVanderbilt University Medical Center: $165,000 over 1y, 0.0% of budgetWASHINGTON UNIVERSITY: $150,000 over 1y, 0.0% of budgetCHILDREN'S RESEARCH INSTITUTE: $150,000 over 1y, 0.2% of budgetThe Broad Institute Inc: $100,000 over 1y, 0.0% of budgetChildren's Hospital Corporation: $77,500 over 1y, 0.0% of budgetCORIELL INSTITUTE FOR MEDICAL RESEARCH INC: $21,986 over 2y, 0.0% of budgetMAYO CLINIC: $20,612 over 1y, 0.0% of budgetAnn & Robert H Lurie Children's Hospital of Chicago: $11,000 over 1y, 0.0% of budgetTHE BOGGY CREEK GANG INC: $10,000 over 1y, 0.2% of budget
Grantee by grantee: a decade per organization, before and after funding

A decade per grantee: revenue shaded, grants as bars, all rows on one timeline.

How much its grantees rely on government

Each dot is one organization Dravet Syndrome Foundation Inc funds: left to right is the share of its income from government, bottom to top the share from Dravet Syndrome Foundation Inc. Bigger dots raise more.

2024
’20’21’22’23’24’25
no gov · 10%0%1%3%5%funder's share of their income ↑0%25%50%75%100%share of the org’s income from government →median 19%
  • Coriell Institute for Medical Research Inc: 44% of income from government
  • The Broad Institute Inc: 19% of income from government
  • Children's Hospital Corporation: 10% of income from government
no gov moneyreceives it· size = income
1get no government money at all
0rely on government for over half their income
typical government reliance, FY20–25
How this is measured
Government income is each org’s traced federal awards (USASpending grants and contracts) plus state payments (open checkbooks) as a share of its total revenue (IRS Form 990); the self-reported government-grant line (990 line 1e) is carried for cross-check: a grantee that reports government grants we could not trace to a source is left off the chart rather than shown as receiving none. An association, not a claim that a grant caused the public funding. Coverage is precision-first, a floor rather than a census; state records exist for 9 states, so a grantee outside them shows no state figure (dimmed) rather than a false zero. Federal award amounts are obligations, which can span years, so a single-year share is indicative. 990 filings lag 12 to 24 months.
05Through Plinth

Warm introductions · Powered by PlinthPlus

How do I get to Dravet Syndrome Foundation Inc?

Find your warmest path to Dravet Syndrome Foundation Inc through trustees and officers whose names appear on both boards. Search for your organization and Plinth traces the shortest route it can evidence.

Each link is a name appearing on two organizations’ public IRS 990 filings, matched on that name and, where the filings support it, on location. A same-state match has geographic support, which is a second matching feature rather than confirmation that the two are one person; a cross-state one is the likeliest to be two people who share a name. Every hop shows its tier, low-confidence and distant paths are held back rather than guessed, and it is worth confirming the person before you use the introduction.

On method. Every financial figure here is read from IRS e-file XML, the funder’s own 990/990-PF, and from the multi-year returns of the 22 grantees we resolved, each linked to its source. Grantee outcomes are each organization’s own program-service reporting (Form 990, Part III), read as association with funding, never as caused by it. Low-confidence name matches are suppressed rather than guessed. How we build these →

How this is measured
Each figure carries one of six labels. Filed is what the funder reported on its return. Official is another government record about an organization, such as a federal award or a charity register, joined by name where no shared identifier exists. Resolved is an identity we worked out where the filing named a recipient without an EIN, kept only above a measured confidence threshold. Computed is arithmetic over those, like themes, portfolio clusters and co-funder strength. Context is a statistic about a place rather than about an organization, which is what the need overlay is: it describes the area a grantee’s address sits in, not where its work lands. Inferred is drawn by a model from text, like the partnerships read out of public news and organization websites. Each is labeled where it appears.

Generated from the IRS Form 990 e-file return for fiscal year 2025, released 2025. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

Source object · view filing

Play a game based on Dravet Syndrome’s filings →

More from the funding graph

The unnamed billions
grants reported with no recipient in the public record
The regranting layer
51% of grant dollars land in the regranting layer
The DAF merry-go-round
$9.7B circulates between donor-advised funds
The endowment market
who holds foundation money, and what just moved
The camps
funders cluster by geography, not ideology
By state
where grant money is based, and what stays home