Funders › NJ › Dravet Syndrome Foundation Inc › 2023
Grants paid by Dravet Syndrome Foundation Inc, tax year 2023
EIN 27-0924627 · Cherry Hill, NJ · Form 990, Schedule I · NTEE T30
In tax year 2023, Dravet Syndrome Foundation Inc (EIN 27-0924627) reported 5 grants paid totaling $771,166. Dataset version 2026.09.0, built 2026-09-03.
Every grant, 2023
| Tax year | Recipient | Match | Amount | Type | Purpose | Source filing |
|---|---|---|---|---|---|---|
| 2023 | Case Western Reserve University Cleveland, OH | A | $216,166 | paid | 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. | 202411079349300116 |
| 2023 | The University of Texas at Austin Austin, TX | A | $165,000 | paid | 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. | 202411079349300116 |
| 2023 | Vanderbilt University Medical Center Nashville, TN | A | $165,000 | paid | 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. | 202411079349300116 |
| 2023 | The Research Foundation for the State University of New York Albany, NY | A | $150,000 | paid | 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. | 202411079349300116 |
| 2023 | The University of Utah Salt Lake City, UT | A | $75,000 | paid | 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. | 202411079349300116 |
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.
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.