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.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$8.5M
+13.7% YoY
Annual Giving
$2.0M
+157.7% YoY
Grant Count
7
+40.0% YoY
Avg Grant Size
$284K
+84.1% YoY
About Dravet Syndrome Foundation Inc
Based on IRS filings
Dravet Syndrome Foundation Inc is a nonprofit organization focused on Philanthropy, Voluntarism & Grantmaking, based in CHERRY HILL, NJ. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $8.5M in total assets. In 2024, it awarded 7 grants totaling $2.0M. Net investment income was $304K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $8,536,916 | $7,509,902 | $6,249,148 |
| Revenue | $4,221,622 | $3,257,096 | $2,515,782 |
| Expenses | $4,259,172 | $2,163,052 | $2,028,839 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $304,376 | $218,414 | $88,364 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 7 recipients in 2024
Grant Size Distribution
22 grants across all recorded years
Open Grants
7 open opportunities from Dravet Syndrome Foundation Inc
Caregiver Connect Grants
DRAVET SYNDROME FOUNDATION INC
Amount
$100 - $400
Deadline
Rolling / Open
Dravet Syndrome Foundation: Clinical Research Grants
DRAVET SYNDROME FOUNDATION INC
Amount
US $250,000
Deadline
Rolling / Open
Dravet Syndrome Foundation: Clinician Researcher Awards Grant
DRAVET SYNDROME FOUNDATION INC
Amount
US $75,000
Deadline
Rolling / Open
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include Children's Hospital of Philadelphia ($1,000,000), Regents Of The University Of Michigan ($500,000), Brown University ($250,000).
| Recipient | Purpose | Amount |
|---|---|---|
| Children's Hospital of Philadelphia Philadelphia, PA | Individuals with Dravet syndrome (DS) can have different disease courses, and there are important differences in how seizure and development affect them over time. Identifying the causes of variation within the patient population may be helpful in providing accurate prognosis and developing new treatments. This project will generate broad genetic data with whole genome sequencing on 500 individuals with DS. These genetic analyses will be paired with clinical data using pioneered novel methods to transform clinical information to a format that can be used for computational analysis. Finally, this project is built for data sharing - all biosample data, genomic data, and clinical data will be shared within the DS Community. | $1,000,000 |
| Regents Of The University Of Michigan Ann Arbor, MI | Despite recent advances in small molecule drug discovery, the majority of Dravet syndrome (DS) patients remain intractable and non-seizure symptoms are not addressed. This project aims to exploit an alternative therapeutic strategy that has been successful in mouse models: Medial Ganglionic Eminence (MGE) progenitor cell transplantation to restore healthy fast-spiking interneurons in DS patient brains. While transgenic mice have provided invaluable insights into seizures and some comorbidities associated with DS, mice have critical differences in physiology and neuroanatomy compared to humans and thus are not the most appropriate model to test a cell transplantation-based therapy. In contrast, this study will use rabbits, which are larger vertebrates, more similar to humans. The results of this large animal work will strengthen the preclinical foundation for future cell transplantation therapeutic strategies in DS patients. | $500,000 |
| Brown University Providence, RI | The scientific understanding of how the SCN1A gene changes brain activity is rapidly evolving. This work will explore whether a brain cell that is integrally important in Dravet syndrome symptomatology has disruptions that lead to specific malfunctions. This work aims to determine how mutations in the SCN1A gene impact these cells' normally powerful ability to "put the brakes on" the brain when it is too active. We believe that the loss of this "brake" may lead to seizures, and our experiments may yield important clues about how to get it working again. | $250,000 |
| Children's Hospital of Philadelphia Philadelphia, PA | Mutations in the SCN1A gene most commonly cause reduced functioning of the Nav1.1 protein and lead to Dravet syndrome, a debilitating epilepsy disorder. However, a new class of SCN1A mutations causes excessive activity of Nav1.1. Individuals with these mutations exhibit an even more severe form of epilepsy as well as developmental delay and intellectual disability. This research group has generated the first mouse expressing a patient-derived mutation associated with this severe early-onset condition. In this fellowship, they will evaluate the novel mouse for neurological abnormalities, including seizures and movement disorders. Additionally, they will investigate the electrical properties of neurons. The overall goal is to understand the mechanism by which both reduced and excessive activity of Nav1.1 can cause epilepsy and to identify treatments for both disorders. | $75,000 |
| University of Colorado Denver Aurora, CO | Current precision therapeutic clinical trials for Dravet syndrome (DS) utilize seizure frequency as the primary outcome measure, but using this alone to assess outcome does not capture the full array of challenges associated with DS. This project will focus on refining a set of clinician and caregiver-reported outcome measures previously created for CDKL5-deficiency disorder and piloting them in patients with DS. The overarching objective is to design valid and feasible outcome measures specifically for DS that represent the full range of the phenotype. The creation of the DS clinical severity assessment-clinician and caregiver (DS-CSA) will be a crucial step towards disease modifying clinical trial readiness in DS. | $75,000 |
| Regents Of The University Of Michigan Ann Arbor, MI | Individuals with Dravet syndrome (DS) suffer from severe seizures that cannot be completely controlled by medications. While most epilepsy research has focused on the more superficial brain regions that we know are prone to seizures, an improved understanding of the role of deeper brain regions in epilepsy may open the door to new therapies. The focus of this proposal is a deep brain region called the locus coeruleus, which sends noradrenergic projections throughout seizure-prone brain regions. The locus coeruleus is known as a "master regulator" that coordinates brain-wide states, such as reward and attention; this project will test the hypothesis that it also plays a critical role in seizures in DS using a mouse model of DS, to (1) determine the activity of noradrenergic neurons during seizures and (2) test whether their activation curtails seizures. | $75,000 |
| Coriell Institute for Medical Research Camden, NJ | 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. | $12,617 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| Mary Anne Meskis | Executive Director | 40 | $172,586 |
| Veronica Hood | Scientific Director | 40 | $165,459 |
| Jamie Cohen | Finance & Program Director | 40 | $108,866 |
| Ted Odlaug PhD | President | 1 | — |
| Ross Nicholas | Vice President | 1 | — |
| Claire Carey | Secretary | 1 | — |
| Josh Goldman | Treasurer | 1 | — |
| Nathan Batt | Trustee | 1 | — |
| Ashley Kerns | Trustee | 1 | — |
| Joseph Sullivan MD | Trustee | 1 | — |
| Bill Kirshner | Trustee | 1 | — |
| Gail Farfel | Trustee | 1 | — |
| Amanda Prather | Trustee | 1 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Dravet Syndrome Foundation Inc?
Dravet Syndrome Foundation Inc is a nonprofit organization focused on Philanthropy, Voluntarism & Grantmaking, based in CHERRY HILL, NJ. It holds $8.5M in total assets as of 2024.
How large is Dravet Syndrome Foundation Inc?
As of 2024, Dravet Syndrome Foundation Inc holds $8.5M in total assets with $4.2M in annual revenue. It awarded 7 grants totaling $2.0M in 2024.
Where does Dravet Syndrome Foundation Inc operate?
Dravet Syndrome Foundation Inc has awarded grants in Colorado, Florida, Illinois, Michigan, Minnesota, Missouri, New Jersey, New York, Ohio, Pennsylvania, Rhode Island, Tennessee, Texas, Utah.
What size grants does Dravet Syndrome Foundation Inc award?
In 2024, Dravet Syndrome Foundation Inc awarded 7 grants totaling $2.0M — an average of about $284K per grant, based on its IRS Form 990 filings.
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 2020–2024.
Explore Open Grants
Browse active grant opportunities in Dravet Syndrome Foundation Inc's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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