Gail brings more than 25 years of pharmaceutical development and regulatory rare disease experience with both large and small pharmaceutical companies. She was most recently the chief executive officer of ProMIS, a biotechnology company focused on the generation of antibody therapeutics for neurodegenerative diseases. Prior to ProMIS, Gail was the executive vice president and global […]
Gail Farfel, PhD – Vice Chair Read More »
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
Seizure Action Plan Coalition Read More »
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
NeurologyLive Partner – Strategic Alliance Partnership Read More »
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,
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
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,
Effect of odorant on mortality and extended amygdala activation in Dravet syndrome Read More »
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
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
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 (identical twins) were born in September 2014 and were the
Tell us about yourself and the Dravet patient in your life Santiago Alessandro Anaya is a 3 yr old warrior and he will soon be having a baby brother, Ezequiel. His mommy is Valeria and his daddy is Jose Angel. We live in Del Rio, Tx. Santiago spends a lot of time with his grandparents
