The Dravet Syndrome Foundation (DSF) is issuing a special request for grant applications proposing research projects that will deepen our understanding of genetic impacts on the diverse phenotypic outcomes of individuals with Dravet syndrome. Application Due Date: September 8, 2023Award Budget: up to $1M distributed over 3 years (beginning in January 2024) Download the RFA […]
Last month, I had the opportunity to attend Rare Disease Week on Capitol Hill with the EveryLife Foundation for Rare Diseases. This event was a unique opportunity to unite with rare disease patients, caregivers, and advocates from around the United States to discuss and advocate for federal legislative initiatives that may impact those living with
Get Involved in Advocacy for Dravet Syndrome Read More »
In 2020 the COVID-19 pandemic completely disrupted the lives and health of the United States and the world. The development of vaccinations against COVID-19 were prioritized, and many people came together to create and test those vaccination options in an attempt to slow the pandemic and prevent more loss of life. Three years later In
COVID-19 Vaccination and Dravet Syndrome Read More »
Satya Sahoo, PhD – Case Western Reserve UniversityJeffrey Buchhalter, MD, PhD – University of Calgary School of MedicineDevelopment of an AI-powered Dravet Syndrome OntologySpecial Collaborative Research Project – 2 years, $240,000 Grant Summary: Dravet Syndrome (DS) is a childhood epilepsy associated with severe cognitive, behavioral and life-threatening consequences. Although a significant amount of experimental data in available
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Dravet Syndrome Foundation (DSF) is excited to announce support and funding for a new special research project. DSF will support Dr. Satya Sahoo and Dr. Jeffrey Buchhalter to develop a Dravet Ontology. DSF is funding $240,000 over the next 2 years to support this effort. An ontology works as a framework to show connections and
DSF Supports the Development of an AI-powered Dravet Ontology Read More »
The American Epilepsy Society 2022 Annual Meeting took place in Nashville, Tennessee on December 2-6. This meeting is packed with academic scientists, expert clinicians and health care providers, pharmaceutical and biotechnology companies, and advocates all gathering to share updates in the field of epilepsy and hold thought discussions regarding where we have come and what
2022 American Epilepsy Society Meeting: A Dravet-focused Recap Read More »
DSF was established with a primary mission focused on advancing research. One way in which DSF works toward accomplishing this mission is through our yearly grant funding cycle, which has directed over $5.6 million to Dravet-focused research since 2009. This year we announced at our annual Research Roundtable that we are funding an additional 5
DSF Announces 2022 Grant Awardees Read More »
When the Dravet Syndrome Foundation was established in 2009, there were no specific treatments for patients with Dravet syndrome and limited guidelines on best treatment approaches. Despite the known genetic cause for the majority of cases, mutations in SCN1A, the idea of a genetic-based therapy seemed a distant possibility at that time. Things have changed
Genetic Therapy for Dravet Syndrome: 2022 State of the Field Read More »
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
Stiripentol (DIACOMIT): History and New Expanded Approval Read More »
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
Preclinical Development of a Gene Therapy for Dravet Syndrome Read More »
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