Upcoming EL-PFDD Meeting February 3rd!

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Dash for Dravet: Virtual Event

By |2021-11-10T13:13:36-05:00November 15th, 2021|Categories: Events|

Dash for Dravet:   Virtual Event Thanksgiving Day is just 10 days away! Here is your chance to get your family and friends together for our 5th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! We are [...]

MONARCH Trial Update

By |2021-11-12T09:23:03-05:00November 15th, 2021|Categories: Research / Treatments|

Phase 1/2a MONARCH clinical trial of STK-001 update Stoke Therapeutics released interim safety, pharmacokinetic, and CSF exposure data from their Phase 1/2a MONARCH trial of STK-001 in individuals with Dravet syndrome. • The data in this analysis comes from 21 patients in the Single Ascending Dose arm of the study (SAD: 1 dose [...]

PAME Memory Wall

By |2021-11-12T09:23:23-05:00November 15th, 2021|Categories: Research / Treatments|

Partners Against Mortality in Epilepsy Memory Wall Partners Against Mortality in Epilepsy (PAME) is a collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy. This range of stakeholders come together with a common goal of improving our understanding of and [...]

Lin Mei, MD, PhD

By |2021-11-13T13:21:41-05:00November 13th, 2021|Categories: Uncategorized|

Dr. Lin Mei is Professor and Chair, Department of Neurosciences; Allen C. Holmes Professor; and Director, Cleveland Brain Health Initiative, Case Western Reserve University School of Medicine, Cleveland, Ohio. Dr. Mei graduated from Jiangxi Medical College, Nanchang University, obtained PhD from University of Arizona, and did postdoctoral training at Johns Hopkins University School of [...]

Jennifer Kearney, PhD

By |2021-11-13T13:16:35-05:00November 13th, 2021|Categories: Uncategorized|

Dr. Kearney received her Ph.D. in Neuroscience from The University of Michigan in 1997. She remained at The University of Michigan for postdoctoral training in Genetics and joined the faculty in 2002 as a Research Investigator in Human Genetics. In 2007, she moved to Vanderbilt University to join the Division of Genetic Medicine and [...]

Gaia Colasante, MD

By |2021-11-13T13:14:39-05:00November 13th, 2021|Categories: Uncategorized|

Dr. Gaia Colasante earned her degree in Biotechnology at University of Milan and her PhD in Neuroscience and Molecular Medicine at University Vita-Salute San Raffaele working in Dr Vania Broccoli Lab. She was interested in forebrain development and in particular she dissected the contribution of the transcription factor Arx in those processes. This interest [...]

Deborah Bilder, MD

By |2021-11-13T13:07:46-05:00November 13th, 2021|Categories: Uncategorized|

Deborah Bilder, MD is a Professor in the Department of Psychiatry in the Division of Child and Adolescent Psychiatry at the University of Utah. She also holds adjunct appointments in the departments of Pediatrics and Educational Psychology. She completed the triple board residency program (Pediatrics, General Psychiatry, Child & Adolescent Psychiatry) at the University [...]

2021 DSF Annual Campaign

By |2021-11-10T23:03:25-05:00November 12th, 2021|Categories: Decoding Dravet Blog|

DSF is built on the foundation of offering support and hope for patients and families living with Dravet syndrome. We have worked hard to engage our community stakeholders – including patient families, clinicians, researchers, and industry partners – to help move the needle forward for more treatment options and better clinical care for affected individuals. [...]

AAV-Mediated Gene Therapy for Developmental and Epileptic Encephalopathies Webinar Series for Professionals

By |2021-11-02T12:46:48-05:00November 5th, 2021|Categories: Decoding Dravet Blog|

Dravet Syndrome Foundation in collaboration with Encoded Therapeutics is offering an educational series for healthcare professionals, on AAV-Mediated Gene Therapy for Developmental and Epileptic Encephalopathies. Several years ago, gene therapy still seemed a distant possibility for Dravet syndrome and other developmental and epileptic encephalopathies (DEEs). Over time, advances to our basic understanding of genetics and [...]

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