Funders › NJ › Dravet Syndrome Foundation Inc › 2025
Grants paid by Dravet Syndrome Foundation Inc, tax year 2025
EIN 27-0924627 · Cherry Hill, NJ · Form 990, Schedule I · NTEE T30
In tax year 2025, Dravet Syndrome Foundation Inc (EIN 27-0924627) reported 9 grants paid totaling $2,727,635. Dataset version 2026.09.0, built 2026-09-03.
Every grant, 2025
| Tax year | Recipient | Match | Amount | Type | Purpose | Source filing |
|---|---|---|---|---|---|---|
| 2025 | Regents of the University of Michigan Ann Arbor, MI | A | $779,250 | paid | 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/ | 202631199349301853 |
| 2025 | Regents of the University of Colorado Denver, CO | A | $662,231 | paid | 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. | 202631199349301853 |
| 2025 | Allen Institute Seattle, WA | A | $449,785 | paid | 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. | 202631199349301853 |
| 2025 | The Board of Trustees of the Leland Stanford Junior University Stanford, CA | A | $309,500 | paid | 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. | 202631199349301853 |
| 2025 | Children's Hospital of Pennsylvania Philadelphia, PA | A | $240,000 | paid | 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/ | 202631199349301853 |
| 2025 | The Broad Institute of MIT and Harvard Cambridge, MA | A | $100,000 | paid | 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. | 202631199349301853 |
| 2025 | The Research Foundation for the State University of New York Albany, NY | A | $100,000 | paid | 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. | 202631199349301853 |
| 2025 | The Children's Hospital Corporation DBA Boston Children's Hospital Boston, MA | A | $77,500 | paid | 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. | 202631199349301853 |
| 2025 | Coriell Institute for Medical Research Camden, NJ | A | $9,369 | paid | 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. | 202631199349301853 |
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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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