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nichelle@dravetfoundation.org

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Seizure Action Plan Coalition

The Seizure Action Plan Coalition began in 2020 as a labor of love between the LGS Foundation, Dravet Syndrome Foundation, and TSC Alliance.  The organizations knew there was an opportunity to bring the epilepsy community together to bring attention and awareness to Seizure Action Plans for people with epilepsy. The three organizations served as the Governing Organizations of the coalition …

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NeurologyLive Partner – Strategic Alliance Partnership

NeurologyLive®, is a multimedia platform dedicated to providing health care professionals with direct access to expert-driven, practice-changing news and insights in neurology. DSF is a member of their Strategic Alliance Partnership (SAP) program. The SAP program builds a community of advocacy groups, medical associations, and medical institutions to foster collaboration and an open exchange of …

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Gaia Colasante, PHD

Reactivating Scn1a gene in different interneuron subtypes to dissect their contribution to Dravet syndrome phenotype

Gaia Colasante, PhD – Universita Vita-Salute San RaffaeleReactivating Scn1a gene in different interneuron subtypes to dissect their contribution to Dravet syndrome phenotypeResearch Grant – 2 years, $150,000 Grant Summary: Dravet syndrome (DS) is a devastating epileptic syndrome with associated relevant behavioral alterations. Heterozygous mutations in Scn1a gene account for the disease and its gene product, the sodium channel Nav1.1, …

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Mackenzie Howard, PHD

Cerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndrome

Mackenzie Howard, PhD – The University of Texas at AustinCerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndromeResearch Grant – 2 years, $165,000 Grant Summary: In addition to frequent and severe seizures, most people with Dravet syndrome also suffer life-altering difficulties (“comorbidities”) with coordinated movement/muscle control, autism-associated behaviors, and learning and memory that …

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William Nobis MD, PHD

Effect of odorant on mortality and extended amygdala activation in Dravet syndrome

William Nobis, MD, PhD – Vanderbilt UniversityEffect of odorant on mortality and extended amygdala activation in Dravet syndromeResearch Grant – 2 years, $165,000**Co-funded with JAM for Dravet Grant Summary: Dravet syndrome (DS) is associated with a high epilepsy-related mortality, including an increased risk of sudden unexpected death in epilepsy (SUDEP). Controlling seizures can decrease the risk of SUDEP, …

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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 …

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

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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Blake Hudson

Hudson Blake

Tell us about yourself and the Dravet patient in your life Hi There!We are from Eastern Kentucky. Hudson “Blake” enjoys trips to the zoo and visiting local farms. He also loves music and dancing. When did the patient’s seizures begin? Hudson Blake and Grady Lee (identicalTwins) were born in September 2014 and were the final …

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