Research News

Research News

Ashwini Sri Hari PhD

Evaluating the effects of sub-chronic exposure to sub-clinical levels of CO on Dravet etiology and associated SUDEP risk

Ashwini Sri Hari, PhD – University of UtahEvaluating the effects of sub-chronic exposure to sub-clinical levels of CO on Dravet etiology and associated SUDEP riskPostdoctoral Fellowship – 1 year, $75,000 Grant Summary: 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 […]

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David Auerbach PhD

Genetic Substrates and Physiological Triggers for Autonomic and Cardiac Abnormalities in Dravet Syndrome

David Auerbach, PhD – The Research Foundation for SUNY/Upstate Medical UniversityGenetic Substrates and Physiological Triggers for Autonomic and Cardiac Abnormalities in Dravet SyndromeClinical Research Grant – 2 years, $150,000**Co-funded with JAM for Dravet Grant Summary: Patients with Dravet syndrome (DS) are at a high risk of sudden death. The cause of death is often unknown, and is

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Stiripentol (DIACOMIT): History and New Expanded Approval

In July of this year, the US Food and Drug Administration (FDA) authorized the use of stiripentol (DIACOMIT) for patients with Dravet syndrome aged 6 months and older and taking clobazam (1). Previously, stiripentol was approved for patients aged 2 years and older in the US, which meant there could be a delay in access

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Preclinical Development of a Gene Therapy for Dravet Syndrome

A recent publication from Tanenhaus et al details the preclinical work by Encoded Therapeutics that has led to the development of a potential gene regulation therapy for Dravet syndrome. The study, published in the journal Human Gene Therapy in June, shows proof-of-concept that their approach, ETX101, can be delivered to the correct cells in the

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Elaine C. Wirrell, MD – Mayo Clinic

Dravet Syndrome International Consensus Project

Elaine C. Wirrell, MD – Mayo ClinicDSF Research Award – $75,000 (1 year project)Dravet Syndrome International Consensus Project (funding provide through unrestricted grants from Biocodex, Greenwich Biosciences, and Zogenix) A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with

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researchers looking at computer screen

Join the EL-PFDD Meeting

Particpate in the EL-PFDD on Dravet Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on Dravet Syndrome EL-PFDD meetings bring together patients and caregivers, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. DSF will be hosting a virtual EL-PFDD on Dravet syndrome on February 3,

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AES 2021 Recap, purple brain

AES Meeting Summary

AES 2021 Meeting Summary On December 3-7th, 2021, the American Epilepsy Society (AES) held its annual conference to bring together clinicians and scientists on the cutting edge of epilepsy research. This year had a multitude of presentations related to Dravet syndrome, making for an exciting few days focused on what we have learned about Dravet

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Wenxi Yu, PhD University of Michigan

Optimizing the Regional Administration of SCN8a-targeting RNAi Therapy

Wenxi Yu, PhD – University of Michigan $50,000 ONE YEAR POSTDOCTORAL FELLOWSHIP Co-funded with JAM for Dravet Mutations in the sodium channel genes SCN1A and SCN8A are a significant cause of Developmental Epileptic Encephalopathies (DEEs), severe seizure disorders. We demonstrated that reduced expression of Scn8a using a specific ASO can prevent the onset of seizures

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