funder-graph

FundersNJ

Grants paid by Dravet Syndrome Foundation Inc

EIN 27-0924627 · Cherry Hill, NJ · Form 990, Schedule I · NTEE T30

Dravet Syndrome Foundation Inc of Cherry Hill, NJ (EIN 27-0924627) reported 31 grants paid totaling $6,406,601 to 19 recipients in tax years 2020–2025, on Form 990, Schedule I. Derived from IRS e-file data, dataset version 2026.09.0, built 2026-09-03.

Grants paid

$6,406,601

31 grants

Recipients

19

distinct organizations

Tax years

2020–2025

6 filings in the corpus

By tax year

Grants by tax year, as the same figures
Tax yearGrants paidAmount paidApproved for future
20202$160,000
20214$260,183
20224$500,000
20235$771,166
20247$1,987,617
20259$2,727,635

Top recipients

The 19 recipients receiving the most from Dravet Syndrome Foundation Inc, by grants paid, out of 19 distinct recipients.

Recipients ranked by total grants paid
RecipientMatchLocationGrantsTotal paidLatest year
The Regents of the University of Michigan 38-6006309AAnn Arbor, MI4$1,404,2502025
The Children's Hospital of Philadelphia 23-1352166APhiladelphia, PA5$1,389,9002025
University of Colorado Denver 84-6000555AAurora, CO3$887,2312025
Allen Institute 91-2155317ASeattle, WA1$449,7852025
The Board of Trustees of the Leland Stanford Junior University 94-1156365AStanford, CA1$309,5002025
The Research Foundation for the State University of New York 14-1368361AAlbany, NY2$250,0002025
Brown University 05-0258809AProvidence, RI1$250,0002024
University of Utah 87-6000525ASalt Lake City, UT2$239,6712023
Case Western Reserve University 34-1018992ACleveland, OH1$216,1662023
The University of Texas at Austin 74-6000203AAustin, TX1$165,0002023
Vanderbilt University Medical Center 35-2528741ANashville, TN1$165,0002023
The Washington University 43-0653611ASt Louis, MO1$150,0002022
Northwestern University 36-2167817AEvanston, IL1$150,0002020
The Ohio State University 31-6025986AColumbus, OH1$150,0002022
The Broad Institute of MIT and Harvard 26-3428781ACambridge, MA1$100,0002025
The Children's Hospital Corporation DBA Boston Children's Hospital 04-2774441ABoston, MA1$77,5002025
Coriell Institute for Medical Research 21-0672684ACamden, NJ2$21,9862025
The Mayo Clinic 41-6011702AMinneapolis, MN1$20,6122021
Camp Boggy Creek 59-3012889AEustis, FL1$10,0002020

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.

Every grant

All 31 grant rows this organization reported, most recent first.

Grants reported by Dravet Syndrome Foundation Inc
Tax yearRecipientMatchAmountTypePurposeSource filing
2025Regents of the University of Michigan Ann Arbor, MIA$779,250paid1. 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
2025Regents of the University of Colorado Denver, COA$662,231paidDravet 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
2025Allen Institute Seattle, WAA$449,785paidCircuit-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
2025The Board of Trustees of the Leland Stanford Junior University Stanford, CAA$309,500paidIdentification 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
2025Children's Hospital of Pennsylvania Philadelphia, PAA$240,000paid1. 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
2025The Broad Institute of MIT and Harvard Cambridge, MAA$100,000paidIn 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
2025The Research Foundation for the State University of New York Albany, NYA$100,000paidAward 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
2025The Children's Hospital Corporation DBA Boston Children's Hospital Boston, MAA$77,500paidSelective 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
2025Coriell Institute for Medical Research Camden, NJA$9,369paidCreating 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
2024Children's Hospital of Philadelphia Philadelphia, PAA$1,000,000paidIndividuals 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
2024Regents of the University of Michigan Ann Arbor, MIA$500,000paidDespite 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
2024Brown University Providence, RIA$250,000paidThe 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
2024Children's Hospital of Philadelphia Philadelphia, PAA$75,000paidMutations 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
2024Regents of the University of Michigan Ann Arbor, MIA$75,000paidIndividuals 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
2024University of Colorado Denver Aurora, COA$75,000paidCurrent 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
2024Coriell Institute for Medical Research Camden, NJA$12,617paidThis 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
2023Case Western Reserve University Cleveland, OHA$216,166paidDevelopment of an AI-powered Dravet Syndrome Ontology. Although a significant amount of data for Dravet syndrome (DS) is available from model organisms and humans, methods to integrate and analyze these disparate data resources are limited in scale and functionality. Artificial intelligence (AI) methods such as ontologies and machine learning (ML) algorithms are ideal for complex analytics over big data to aid in knowledge discovery. Satya Sahoo, PhD has already applied a combined epilepsy ontology and ML approach to analyze data resulting in high accuracy classification models. These findings suggest that AI methods can be used for automated analysis of basic science and clinical literature to compare model systems and humans and indicate new experiments to characterize these relationships. A DSF Research Grant was awarded to Dr. Sahoo to extend the epilepsy ontology specifically for DS that together with ML algorithms can automatically index literature and enable analysis of data.202411079349300116
2023The University of Texas at Austin Austin, TXA$165,000paidCerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndrome. In addition to frequent and severe seizures, most people with Dravet syndrome (DS) also suffer life-altering difficulties with coordinated movement/muscle control, autism-associated behaviors, and learning and memory. The cerebellum is a brain region known to be involved in movement, cognition/memory, and social behavior, but is understudied in DS. Preliminary data showed that Purkinje cells are hypo-active in a mouse model of DS. Similar hypoactivity of this cell type causes movement disorders and autism in other neurological diseases. A DSF Research Grant was awarded to Mackenzie Howard, PhD to utilize a novel mouse model of DS that has allowed the study of DS-related genetic mutations in this specific cell type and the link to changes in comorbidities often reported in DS.202411079349300116
2023Vanderbilt University Medical Center Nashville, TNA$165,000paidCerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndrome. A DSF Research Grant was awarded to William Nobis, PhD to investigate if chronic exposure to the odorant 2-phenylethanol ("rose odor") will decrease mortality and improve neuropsychiatric comorbidities of DS through attenuation of extended amygdalar neuronal activation. Given the long history of odorant therapy in the treatment of seizures, as well as links between the areas of the brain that receive olfactory inputs having a role in control of respiration and seizure-related breathing dysfunction, there is potential for odorants that modulate these circuits to provide a non-invasive, well-tolerated means to decrease seizure-related death. Exciting preliminary data using a mouse model of DS suggests that mortality is reduced by chronic exposure to rose odor, and this study will build on that data to explore the effects on mortality, seizure frequency and comorbidities.202411079349300116
2023The Research Foundation for the State University of New York Albany, NYA$150,000paidGenetic Substrates and Physiological Triggers for Autonomic and Cardiac Abnormalities in Dravet Syndrome. Using cellular and animal models, David Auerbach, PhD previously demonstrated that Dravet syndrome (DS) mutations result in electrical disturbances in the heart, and cardiac arrhythmias preceded Sudden Unexpected Death in Epilepsy (SUDEP). Patients DS are at a high risk of SUDEP. A DSF Clinical Research Grant was awarded to Dr. Auerbach to perform detailed ECG analysis in two severe forms of epilepsy (DS & Lennox-Gastaut Syndrome) during specific non-seizure physiological states and investigate the temporal evolution of these measures leading up to and following a seizure, which will foster the future development and validation of ECG markers for cardiac-mediated SUDEP risk in DS patients.202411079349300116
2023The University of Utah Salt Lake City, UTA$75,000paidEvaluating the effects of sub-chronic exposure to sub-clinical levels of CO on Dravet etiology and associated SUDEP risk. Carbon monoxide (CO) is one of the top most deadly air pollutants that is positively associated with an increased risk of epilepsy hospitalizations and sub-clinical seizures. CO is known to cause hypoxemia, hypoxia and impair lung function. Dravet syndrome (DS), a debilitating pediatric genetic epilepsy is characterized by refractory seizures, increased mortality rate due to sudden unexpected death in epilepsy (SUDEP), and cognitive/psychomotor dysfunction. SUDEP has no clear mechanisms but is reported to be caused by cardio-respiratory mechanisms. A DSF Postdoctoral Fellowship was awarded to Ashwini Sri Hari, PhD to address the question of whether and how CO exposure exacerbates pathomechanisms in DS patients and their associated SUDEP risk.202411079349300116
2022University of Colorado Denver Aurora, COA$150,000paidLymphoblast Cell Lines as a Model to Uncover Metabolic Defects in Dravet Syndrome- Dr. Patel and Dr. Knupp work together on this collaborative project to establish lymphoblast cell lines from the blood of patients with Dravet syndrome and their unaffected siblings. This library of cell lines will then be used to investigate alterations in energy metabolism that may impact patients with Dravet syndrome as well as stand as a future resource for investigations of new drugs, diets, and treatment responses.202301089349300125
2022The Ohio State University Columbus, OHA$150,000paidTargeting Molecular Responses to Seizures in Dravet Syndrome- Dr. Wagnon's work previously identified that the gene Npas4 is reduced in a mouse model of Dravet syndrome. This project hypothesized that restoration of high Npas4 expression could ameliorate seizures and other symptoms using viral-mediated delivery of Npas4 to the brain of mice with SCN1A haploinsufficiency.202301089349300125
2022The Washington University St Louis, MOA$150,000paidKetogenic Diet Modulated Brain Energy Metabolism in Dravet Syndrome- Dr. Thio and Dr. Garbow work together on this collaborative project to better understand the mechanisms whereby the ketogenic diet reduces seizures in Dravet syndrome. They will investigate two metabolic pathways in a genetic mouse model of Dravet syndrome and use neuroimaging techniques to assess these impacts within the brain.202301089349300125
2022The Regents of the University of Michigan Ann Arbor, MIA$50,000paidOptimizing the Regional Administration of SCN8a-targeting RNAi Therapy- Dr. Yu's project worked to develop an AAV-delivery for a genetic-based therapy targeting the SCN8A gene. While the majority of cases of Dravet syndrome are caused by mutations in SCN1A, Dr. Yu and the Meisler lab have shown that using genetic-based therapies to reduce expression of the SCN8A gene can compensate for loss-of-function SCN1A-mutations that cause Dravet syndrome.202301089349300125
2021University of Utah Salt Lake City, UTA$164,671paidResearch Grant- Cameron Metcalf, PHD- University of Utah. Brainstem glial control of respiration in a mouse model of Dravet syndrome. Dr. Metcalf plans to investigate glial cell types in the brain of a mouse model of Dravet syndrome to better understand how inflammation and altered signaling may be impacted by seizures and the underlying genetic mutation that causes Dravet syndrome. They will test the hypothesis that by targeting these glial and inflammatory pathways therapeutically they can reduce premature mortality in this mouse. The goal of this work is to better understand causes and interventions for SUDEP (sudden unexpected death in epilepsy) in Dravet syndrome.202221229349301677
2021The Children's Hospital of Philadelphia Philadelphia, PAA$50,000paidPostdoctoral Fellowship- Ala Somarowthu, PhD- Children's Hospital of Philadelphia. Seizure prediction and detection in a mouse model of Dravet syndrome via machine learning. Given the uncontrolled seizures in Dravet syndrome, seizure prediction or early detection would be useful for optimal intervention. Dr. Somarowthu will use advanced machine learning algorithms to develop models to predict seizures before onset and quickly detect active seizures in mouse models of Dravet syndrome. They hope developing and modeling these detection systems in a mouse model will pave the way for similar approaches in patients.202221229349301677
2021The Children's Hospital of Philadelphia Philadelphia, PAA$24,900paidResearch Grant- Ethan Goldberg, MD, PHD- Children's Hospital of Philadelphia. Optimizing a novel SCN1A delivery approach for Dravet syndrome therapy. As part of a collaboration with Dr. Eric Kremer and Dr. Moran Rubinstein, Dr. Goldberg plans to investigate a new way to deliver gene therapy to overcome the current size constraints to replacing the mutated copy of the SCN1A gene. They will test this new delivery vector in a mouse model of Dravet syndrome to determine the effectiveness of this approach to get the replacement gene to the correct cells and to decrease seizures and other symptoms related to Dravet syndrome.202221229349301677
2021The Mayo Clinic Minneapolis, MNA$20,612paidResearch Grant- Elaine Wirrell, MD- Mayo Clinic. Dravet Syndrome International Consensus Project. Dr. Wirrell will utilize a Delphi consensus method with an international panel of 18-20 experts in Dravet syndrome, including experienced neurologists and caregivers. The results of this study will be the establishment of international best practice treatment guidelines for the presentation, diagnosis, and intervention for patients with Dravet syndrome.202221229349301677
2020Northwestern University Evanston, ILA$150,000paidResearch Grant - Jennifer Kearney, PHD - Northwestern University. MicroRNA-mediated modification of Dravet syndrome. Dr. Kearney plans to investigate microRNAs (small RNA molecules that regulate expression of gene products) and their modulation of Nav1.1. They have identified two miRNAs that are elevated following seizures and can reduce SCN1A expression and hypothesize that this may contribute to disease progression. She will study this relationship further and evaluate this pathway as a therapeutic target for Dravet syndrome.202131239349301903
2020Camp Boggy Creek Eustis, FLA$10,000paidFamily Weekend Funding. During weekends in the spring and fall, Camp Boggy welcomes campers and their whole families to camp where parents can relax and find needed support among other families dealing with similar emotional and financial challenges. Brothers and sisters get to participate in the same fun-filled activities since every family member is considered a camper during family weekends. This grant allowed 5 families with Dravet syndrome to attend camp.202131239349301903

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.

Source filings

Every figure above is traceable to one of these IRS e-file returns by its OBJECT_ID.

Returns this page is derived from
FormTax yearPeriod endFiledSchemaIRS OBJECT_ID
99020252025-12-31not stated2025v4.0202631199349301853
99020242024-12-31not stated2024v5.0202521139349301012
99020232023-12-31not stated2023v5.0202411079349300116
99020222022-12-31not stated2022v5.0202301089349300125
99020212021-12-31not stated2021v4.0202221229349301677
99020202020-12-31not stated2020v4.0202131239349301903

Derived from IRS Form 990 e-file XML; recipient identities from the IRS Exempt Organizations Business Master File. Dataset version 2026.09.0, built 2026-09-03. The same rows as Parquet: manifest; as JSON: /api/funders/270924627.json.

The same organization elsewhere in the program: exempt status and filing health · federal awards · grant guidance · open opportunities.

This is informational only, derived from public data on the dates shown. It is not an eligibility determination, and not legal, tax, or accounting advice. Verify against the official source before relying on it.