Funders › NJ › Dravet Syndrome Foundation Inc › 2024
Grants paid by Dravet Syndrome Foundation Inc, tax year 2024
EIN 27-0924627 · Cherry Hill, NJ · Form 990, Schedule I · NTEE T30
In tax year 2024, Dravet Syndrome Foundation Inc (EIN 27-0924627) reported 7 grants paid totaling $1,987,617. Dataset version 2026.09.0, built 2026-09-03.
Every grant, 2024
| Tax year | Recipient | Match | Amount | Type | Purpose | Source filing |
|---|---|---|---|---|---|---|
| 2024 | Children's Hospital of Philadelphia Philadelphia, PA | A | $1,000,000 | paid | 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. | 202521139349301012 |
| 2024 | Regents of the University of Michigan Ann Arbor, MI | A | $500,000 | paid | 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. | 202521139349301012 |
| 2024 | Brown University Providence, RI | A | $250,000 | paid | 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. | 202521139349301012 |
| 2024 | Children's Hospital of Philadelphia Philadelphia, PA | A | $75,000 | paid | 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. | 202521139349301012 |
| 2024 | Regents of the University of Michigan Ann Arbor, MI | A | $75,000 | paid | 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. | 202521139349301012 |
| 2024 | University of Colorado Denver Aurora, CO | A | $75,000 | paid | 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. | 202521139349301012 |
| 2024 | Coriell Institute for Medical Research Camden, NJ | A | $12,617 | paid | 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. | 202521139349301012 |
Match tier: A Reported EIN · B Exact name and place · C Strong name match · D Probable name match · U Unresolved. Tiers C and D are inferred, not reported; see how matching works.
Recipient matching for this dataset version has not yet completed its independent precision check. Tier A rows carry the EIN the filer reported; tiers B–D are the matcher's inference and should be read as leads until the check is published on the methodology page.
Derived from IRS Form 990 e-file XML. Dataset version 2026.09.0, built 2026-09-03. All years for this funder.
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