DSF Community Book Club - Dravet Syndrome Foundation
We are excited to announce that DSF is launching its first Community Book Club and we can't wait to share this experience with you! The book club will be led| Dravet Syndrome Foundation
In our last two blog posts (Week 1 and Week 2), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and planning for their long-term care. This week, we’re focusing on some key information you’ll want to start documenting when […]| Dravet Syndrome Foundation
In last week’s blog post, we introduced the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder and how it can help with transition planning. In this week’s blog, we’re diving into how to get started with the C.A.R.E. Binder, along with the next steps to help you make the most of it. When beginning the […]| Dravet Syndrome Foundation
Kelly Knupp, MD – Children’s Hospital Colorado Longitudinal Dravet Syndrome Natural History Study Special Project Funding: 3 years – $662,231 Grant Summary from the Investigators: The Dravet Lifespan Multidisciplinary Clinic at Children’s Hospital Colorado in collaboration with the Dravet Syndrome Foundation is pleased to announce the Dravet Syndrome Natural History Study. A natural history study […]| Dravet Syndrome Foundation
Ivan Soltesz, PhD – Stanford University, Jack Parent, MD – University of Michigan, Julie Ziobro, MD, PhD- University of Michigan and Tilo Gschwind, PhD- Stanford University Identification of Behavioral Biomarkers in Children with DS: A Pilot Study Special Project Funding: 2 years – $338,750 Title: Identification of Behavioral Biomarkers in Children with Dravet Syndrome: A […]| Dravet Syndrome Foundation
With the constant care demands of your loved one with Dravet syndrome, it’s understandable that transition planning might not even be on your radar. Transitioning to adulthood is a complex, often overwhelming, and deeply emotional process. The journey can look very different from one household to the next, as each young adult’s abilities, needs, and future […]| Dravet Syndrome Foundation
With the recent passage of HR 1 by Congress, rare disease communities – including Dravet syndrome – are seeking clarity on how the new legislation may impact their loved ones and families, particularly in areas such as access to care, insurance coverage, and treatment affordability. One of the programs most impacted from these major policy […]| Dravet Syndrome Foundation
Else A. Tolner, PhD – Leiden University Medical Centre Neurophysiological characterization of the therapeutic effect of exogenous NaV1.1 channels Research Grant in the amount of $110,000 over 3 years Grant Summary from the Investigators: The early idea behind gene therapy was to replace faulty genes with healthy ones. While this can be relatively simple for […]| Dravet Syndrome Foundation
Lori L. Isom, PhD- University of Michigan Understanding phenotypes and biomarkers leading to SUDEP in a transgenic rabbit model of Dravet syndrome Special Project Funding: 3 years – $750,000 Grant Summary from the Investigators: Sudden Unexpected Death in Epilepsy (SUDEP) is a leading cause of death in patients with epilepsy. SUDEP mechanisms are not understood, […]| Dravet Syndrome Foundation
David Auerbach, PhD- The Research Foundation for SUNY/Upstate Medical University Award Supplement for Genetic Substrates and Physiological Triggers for Autonomic and Cardiac Abnormalities in Dravet Syndrome Supplemental Award to a 2022 Clinical Research Grant: 1 year – $100,000 Grant Summary from the Investigators: People with Dravet Syndrome (DS) are at a high risk of Sudden Unexpected […]| Dravet Syndrome Foundation
Being a caregiver for someone with Dravet syndrome can feel overwhelming. It’s easy to feel like no one else understands our day to day experiences or the challenges we face but connecting with others who get it, and live that shared experience can make a HUGE difference. This is where a Caregiver Connect Grant can […]| Dravet Syndrome Foundation
We are excited to announce that DSF is launching its first Community Book Club and we can't wait to share this experience with you! The book club will be led| Dravet Syndrome Foundation
Resources for professionals caring for infants, children, and adults with Dravet syndrome.| Dravet Syndrome Foundation
DSF provides many caregiver resources for the Dravet syndrome community. We wan't you to know you're not alone.| Dravet Syndrome Foundation
Join us at one of our annual galas such as A Night Under the Stars or Dance for Dravet, or join us at one of our Double Down Casino themed events!| Dravet Syndrome Foundation
I became involved with the Dravet Syndrome Foundation (DSF) to find a sense of control where there was none. Being active and trying to be part of a solution| Dravet Syndrome Foundation
Diagnosis and Treatment Guidelines for clinical presentation, EEG and MRI findings, genetic testing, first and second-line treatments for seizures.| Dravet Syndrome Foundation
The DSF Patient Assistance Grant Program offers grants to patients for necessary medical equipment, therapy devices, and educational aids not covered by| Dravet Syndrome Foundation
