This organization files Form 990, which has no section for application policy. Its filings cannot say either way.
The latest filing we hold carries no statement about applications. That is not the same as closed: public-charity Form 990s have no field for it, and many foundations leave the section blank.
Grants paid by year
Total assets by year
Where the money went · FY2024
Form 990 splits expenses into program services, management and fundraising. The split is self-reported, and a grantmaker, a research institute and a direct-service nonprofit book the same work differently. A line the return does not carry reads "not available"; it is never counted as zero.
| Year | Form | Revenue | Expenses | Grants paid | Assets | Net assets |
|---|---|---|---|---|---|---|
| FY2024 | 990 | $4,221,622 | $4,259,172 | $2,509,120 | $8,536,916 | $6,976,053 |
| FY2023 | 990 | $3,257,096 | $2,163,052 | $955,138 | $7,509,902 | $6,914,736 |
| FY2022 | 990 | $2,515,782 | $2,028,839 | $693,698 | $6,249,148 | $5,760,774 |
| FY2021 | 990 | $2,186,012 | $1,265,323 | $444,058 | $5,918,927 | $5,326,604 |
| FY2020 | 990 | $1,964,117 | $921,735 | $328,994 | $4,882,989 | $4,385,466 |
Figures are as reported on the e-filed return, with no restatement. Fiscal years are the funder's own tax year, labelled by the calendar year the period ends in. A blank line means the return does not carry that figure; a real zero shows as $0. When an amended return replaces an original, every figure here uses the amended return. The original is not shown. Giving is what the funder actually paid out toward its charitable purpose in the year (qualifying distributions on Form 990-PF, charitable disbursements otherwise). Assets are what it holds; giving is what moves.
Recipient focus areas
Where recipients are
Based on the 95% of grant rows we could match to an organization record. The rest stay as reported. The IRS assigns the NTEE category when it grants exemption. It often reflects the original filing, not today's giving.
| Recipient | Purpose | Amount | Year | Source |
|---|---|---|---|---|
| Children's Hospital of PhiladelphiaPhiladelphia, 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 | 2024 |
Recipients are shown as the funder wrote them on the return. A recipient with a link was matched to an organization record; the rest stay as reported and are never guessed.
| Name | Title | Hours / week | 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 |
From the officer list on the latest e-filed return. Compensation is as reported there; a blank means the return carries no figure.
| Regents Of The University Of MichiganAnn 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 | 2024 |
| Brown UniversityProvidence, 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 | 2024 |
| Case Western Reserve UniversityCleveland, OH | Development 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. | $216,166 | 2023 |
| Vanderbilt University Medical CenterNashville, TN | Cerebellar 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. | $165,000 | 2023 |
| The University of Texas at AustinAustin, TX | Cerebellar 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. | $165,000 | 2023 |
| University of UtahSalt Lake City, UT | Research 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. | $164,671 | 2021 |
| The Ohio State UniversityColumbus, OH | Targeting 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. | $150,000 | 2022 |
| The Research Foundation for the State University of New YorkAlbany, NY | Genetic 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. | $150,000 | 2023 |
| Northwestern UniversityEvanston, IL | Research 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. | $150,000 | 2020 |
| University of Colorado DenverAurora, CO | Lymphoblast 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. | $150,000 | 2022 |
| The Washington UniversitySt Louis, MO | Ketogenic 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. | $150,000 | 2022 |
| University of Colorado DenverAurora, 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 | 2024 |
| The University of UtahSalt Lake City, UT | Evaluating 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. | $75,000 | 2023 |
| Regents Of The University Of MichiganAnn 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 | 2024 |
| Children's Hospital of PhiladelphiaPhiladelphia, 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 | 2024 |
| The Children's Hospital of PhiladelphiaPhiladelphia, PA | Postdoctoral 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. | $50,000 | 2021 |
| The Regents of the University of MichiganAnn Arbor, MI | Optimizing 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. | $50,000 | 2022 |
| The Children's Hospital of PhiladelphiaPhiladelphia, PA | Research 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. | $24,900 | 2021 |
| The Mayo ClinicMinneapolis, MN | Research 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. | $20,612 | 2021 |
| Coriell Institute for Medical ResearchCamden, 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 | 2024 |
| Camp Boggy CreekEustis, FL | Family 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. | $10,000 | 2020 |
| 1 |
| $0 |
| Ross Nicholas | Vice President | 1 | $0 |
| Claire Carey | Secretary | 1 | $0 |
| Josh Goldman | Treasurer | 1 | $0 |
| Nathan Batt | Trustee | 1 | $0 |
| Ashley Kerns | Trustee | 1 | $0 |
| Joseph Sullivan Md | Trustee | 1 | $0 |
| Bill Kirshner | Trustee | 1 | $0 |
| Gail Farfel | Trustee | 1 | $0 |
| Amanda Prather | Trustee | 1 | $0 |
Nearest by size, location and giving pattern in the database. Geography weighs heavily. Treat it as a starting list, not a ranking of fit.
Form 990 · FY2024 · period ending Dec 31, 2024IRS bulk XML
Filing id 202521139349301012
Form 990 · FY2023 · period ending Dec 31, 2023IRS bulk XML
Filing id 202411079349300116
Form 990 · FY2022 · period ending Dec 31, 2022
Filing id 202301089349300125
Form 990 · FY2021 · period ending Dec 31, 2021
Filing id 202221229349301677
Form 990 · FY2020 · period ending Dec 31, 2020
Filing id 202131239349301903
IRS filings are the source for every fact on this page. Nothing a model writes is ever a source; it can only point at a row here.