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. 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.
Dravet Syndrome Foundation Inc at a glance
In short: Dravet Syndrome Foundation Inc gave $2.7M across 9 grants in 2025 (avg $303K), top state Michigan. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $2,727,635
- +37.2% vs 2024
- Grants made (2025)
- 9
- +28.6% vs 2024
- Average grant
- $303,071
- +6.7% vs 2024
- Median grant
- $240,000
- Total assets
- $9,833,611
- +15.2% vs 2024
- Primary geography
- Michigan (29% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Dravet Syndrome Foundation Inc
Open Grants
7 open opportunities from Dravet Syndrome Foundation Inc
Caregiver Connect Grants
Dravet Syndrome Foundation Inc
Amount
$100 - $400
Deadline
Deadline not published
Dravet Syndrome Foundation: Clinical Research Grants
Dravet Syndrome Foundation Inc
Amount
US $250,000
Deadline
Deadline not published
Dravet Syndrome Foundation: Clinician Researcher Awards Grant
Dravet Syndrome Foundation Inc
Amount
US $75,000
Deadline
Deadline not published
Who Dravet Syndrome Foundation Inc funds
How this funder distributes its grants
Top Recipients
Top 9 recipients in 2025
The largest 2025 recipient was Regents of the University of Michigan ($779K). Together the top 9 received $2.7M.
Grant Size Distribution
29 grants across all recorded years
The most common grant size was in the $100–250K range: 11 grants of 29 (38%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 9 itemized grants.
States
Cities
How Dravet Syndrome Foundation Inc gives
- Giving grew 446% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $160K (2020) to $2.7M (2025). In 2025 it made 9 grants totaling $2.7M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Regents of the University of Michigan Ann Arbor, MI | 1. University of Michigan - Special Project Funding:Understanding Phenotypes and Biomarkers Leading to SUDEP in a Transgenic Rabbit Model - $750,000. This study uses a transgenic rabbit model of Dravet syndrome to identify observable traits and measurable biomarkers associated with increased risk of sudden unexpected death in epilepsy (SUDEP). The goal is to characterize physiological, behavioral, and cardiac indicators that precede critical events. By establishing reliable biomarkers, the research aims to improve risk stratification and enable earlier intervention. The model also provides a platform for testing preventative strategies and understanding underlying mechanisms. 2. In conjunction with Stanford University - Special Project Funding: Identification of Behavioral Biomarkers in Children with DS: A Pilot Study - $29,250. Details for each of these projects can be found at https://dravetfoundation.org/dsf-funded-research/ | $779,250 |
| Regents of the University of Colorado Denver, CO | Dravet Syndrome Natural History Study. The Natural History study will recruit and follow children and adults with Dravet Syndrome to track how often and how severely issues like behavior, development, sleep, appetite, autonomic symptoms, and motor function occur and change over time. The study will establish a robust database that will capture standardized clinical, neuropsychological, and parent-reported data on key signs and symptoms across the lifetime. The study will also explore how these outcomes connect to specific genetic changes to better understand how different types of mutations might influence Dravet Syndrome. This study will increase understanding of Dravet syndrome, and lead to better design of treatments and clinical trials. | $662,231 |
| Allen Institute Seattle, WA | Circuit-Selective Whole SCN1A Gene Delivery for Dravet Syndrome. This research focuses on delivering a full-length functional gene specifically to affected neural circuits rather than broadly across the brain utilizing different mouse models of Dravet syndrome. The goal is to improve therapeutic precision while minimizing off-target effects. Using advanced vector systems and targeting strategies, the team aims to restore gene function in key cell populations responsible for disease symptoms. This approach seeks to enhance efficacy and safety of gene therapy by tailoring delivery to the most relevant neural networks. | $449,785 |
| The Board of Trustees of the Leland Stanford Junior University Stanford, CA | Identification of Behavioral Biomarkers in Children with DS: A Pilot Study In conjunction with University of Michigan, this pilot study seeks utilize AI and machine learning to identify subtle but measurable behavioral patterns that can serve as biomarkers for disease progression and treatment response in Dravet syndrome that would be undetectable using traditional observational methods. Researchers aim to define objective indicators of cognitive, social, and functional changes with the goal to improve clinical trial endpoints and enable more sensitive tracking of outcomes. Findings may support the development of better tools for evaluating therapeutic impact in patient populations. | $309,500 |
| Children's Hospital of Pennsylvania Philadelphia, PA | 1. In conjunction with Tel Aviv University and Institut de Génétique Moléculaire de Montpellier - Transformational Science Grant: Molecular Characterization of the Therapeutic Effect of Exogenous Nav1.1 - $150,000. 2. In conjunction with MIT and Harvard University - Research Grant: Base Editing for the Treatment and Prevention of Dravet Syndrome - $90,000. Details for each of these projects can be found at https://dravetfoundation.org/dsf-funded-research/ | $240,000 |
| The Broad Institute of MIT and Harvard Cambridge, MA | In conjunction with The Children's Hospital of Philadelphia, Base Editing for the Treatment and Prevention of Dravet Syndrome. This project aims to develop a precision gene-editing approach using base editing technology to directly correct disease-causing mutations at the DNA level using a mouse model of Dravet syndrome. The goal is to create a durable, potentially one-time treatment that can restore normal gene function without introducing double-strand DNA breaks. Researchers are working to optimize delivery systems, improve editing efficiency, and evaluate safety in relevant models. Ultimately, the project seeks to establish a foundation for preventive or early-intervention therapies that address the root genetic cause rather than managing symptoms. | $100,000 |
| The Research Foundation for the State University of New York Albany, NY | Award Supplement for Genetic Substrates and Physiological Triggers for Autonomic and Cardiac Abnormalities. This project investigates the genetic and physiological factors underlying autonomic and cardiac dysfunction in Dravet syndrome and closely related epilepsy disorders. The goal is to identify specific triggers and biological mechanisms that contribute to irregular heart rhythms and autonomic instability. Researchers are integrating genetic analysis with physiological monitoring to better understand risk factors. Insights from this work may inform strategies to predict, monitor, and reduce life-threatening complications for Dravet syndrome. | $100,000 |
| The Children's Hospital Corporation dba Boston Children's Hospital Boston, MA | Selective Activation of Hippocampal Parvalbumin Interneurons via Focused Ultrasound Neuromodulation for Seizure Suppression in SCN1A Mice. This project evaluates a non-invasive neuromodulation approach using focused ultrasound to selectively activate specific inhibitory neurons in the brain. By targeting parvalbumin interneurons in the hippocampus, researchers aim to reduce hyperexcitability and suppress seizures in Dravet syndrome. The study assesses feasibility, precision, and effectiveness in preclinical models, while also examining safety and durability of the response. The long-term goal is to develop a targeted, non-pharmacological intervention for seizure control. | $77,500 |
| Coriell Institute for Medical Research Camden, NJ | Creating a biobank of patient-derived induced pluripotent stem cells. This project aims to establish a biobank of five unique lines of commercially-available induced pluripotent stem cells (iPSCs) from patient blood samples. The cellular reprogramming will be conducted by the Coriell Institute for Medical Research and samples will be housed and distributed through an additional partnership with the Orphan Disease Center at The University of Pennsylvania. Cell lines will be available to researchers in academic and for-profit research settings at a low cost, set to cover the long-term maintenance of the biobank effort. | $9,369 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $9,833,611 | $4,752,243 | $4,783,665 | $2,727,635 | 9 | $273,034 |
| 2024 | $8,536,916 | $4,221,622 | $4,259,172 | $1,987,617 | 7 | $304,376 |
| 2023 | $7,509,902 | $3,257,096 | $2,163,052 | $771,166 | 5 | $218,414 |
| 2022 | $6,249,148 | $2,515,782 | $2,028,839 | $500,000 | 4 | $88,364 |
| 2021 | $5,918,927 | $2,186,012 | $1,265,323 | $260,183 | 4 | $5,151 |
| 2020 | $4,882,989 | $1,964,117 | $921,735 | $160,000 | 2 | $16,250 |
About Dravet Syndrome Foundation Inc
Based on IRS filings
Dravet Syndrome Foundation Inc is a public charity, based in Cherry Hill, NJ. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $9.8M in total assets. In 2025, it awarded 9 grants totaling $2.7M. Net investment income was $273K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Dravet Syndrome Foundation Inc is led by Mary Anne Meskis, Chief Executive Officer since 2025 (on filings since 2020); 3 of 13 officers listed in 2025 are compensated.
Officers on the 2025 filing
Mary Anne Meskis
Chief Executive Officer
Executive Director → Chief Executive Officer, 2025
On filings since 2020
40 hrs/week
$132K (2020) → $179K (2025)
Ross Nicholas
Chair
Secretary → Vice President, 2023
Vice President → Chair, 2025
On filings since 2021
1 hr/week
No compensation reported
Joseph Sullivan MD
Director
Trustee → Director, 2025
On filings since 2020
1 hr/week
No compensation reported
Ted Odlaug PhD
Director
Vice President → President, 2023
President → Director, 2025
On filings since 2020
1 hr/week
No compensation reported
Nathan Batt
Director
Trustee → Director, 2025
On filings since 2022
1 hr/week
No compensation reported
Bill Kirshner MD
Director
Trustee → Director, 2025
On filings since 2023
1 hr/week
No compensation reported
Amanda Prather PA-C
Director
New on the 2025 filing
1 hr/week
No compensation reported
Mike Chieco
Director
New on the 2025 filing
1 hr/week
No compensation reported
Jamie Cohen CPA
Chief Financial Officer
Chief Financial Officer → Finance & Program Director, 2024
Finance & Program Director → Chief Financial Officer, 2025
On filings since 2021
40 hrs/week
$82K (2021) → $115K (2025)
Veronica Hood PhD
Chief Scientific Officer
Scientific Director → Chief Scientific Officer, 2025
On filings since 2021
40 hrs/week
$140K (2021) → $174K (2025)
Claire Carey
Secretary
Trustee → Secretary, 2023
On filings since 2022
1 hr/week
No compensation reported
Josh Goldman
Treasurer
On filings since 2022
1 hr/week
No compensation reported
Gail Farfel PhD
Vice Chair
Trustee → Vice Chair, 2025
On filings since 2023
1 hr/week
No compensation reported
Former officers (7)
- Former: Ashley Kerns (2020–2024) — Trustee
- Former: Amanda Prather (2024) — Trustee
- Former: Kate Hintz (2020–2023) — Past President
- Former: Brad Galer (2023) — Past Trustee
- Former: Jenny Tischer (2020–2022) — Past Trustee
- Former: Tim Wood (2020–2022) — Past Treasurer
- Former: Nicole Villas (2020–2021) — Past President
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $179K, to Mary Anne Meskis (Chief Executive Officer). 3 officers or directors reported compensation on that filing.
Frequently asked questions about Dravet Syndrome Foundation Inc
How much does Dravet Syndrome Foundation Inc give each year?
Dravet Syndrome Foundation Inc gave $2.7M across 9 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $2.0M across 7 grants.
What is Dravet Syndrome Foundation Inc's typical grant size?
Dravet Syndrome Foundation Inc's median grant in 2025 was $240,000, and its average grant was $303,071, across 9 grants on its 2025 IRS Form 990.
Where does Dravet Syndrome Foundation Inc give grants?
Dravet Syndrome Foundation Inc's top state is Michigan, with 29% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Colorado (24%) and Washington (16%).
Does Dravet Syndrome Foundation Inc give general operating support?
Not in 2025: none of the 9 grants with a stated purpose on Dravet Syndrome Foundation Inc's 2025 IRS Form 990 were described as general or operating support.
Who are Dravet Syndrome Foundation Inc's largest grantees?
Dravet Syndrome Foundation Inc's largest 2025 grantees include Regents of the University of Michigan ($779,250), Regents of the University of Colorado ($662,231) and Allen Institute ($449,785), according to its 2025 IRS Form 990. Together they received 69% of its itemized 2025 grant dollars.
How large is Dravet Syndrome Foundation Inc?
Dravet Syndrome Foundation Inc reported $9.8M in total assets on its 2025 IRS Form 990. Its revenue that year was $4.8M.
What is Dravet Syndrome Foundation Inc's EIN?
Dravet Syndrome Foundation Inc's EIN (Employer Identification Number) is 27-0924627. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS April 30, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS April 27, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS April 17, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS April 16, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS April 22, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS April 29, 2026)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
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