Why should you keep filling out surveys about life with Dravet syndrome? Repeated requests to fill out surveys can start to feel repetitive and when results take months or years to be released, it may feel like your input is not making a meaningful difference. However, I would like to encourage you in today’s blog [...]
The Dravet syndrome community has long been awaiting gene therapy approaches to provide true disease-modifying treatments. We now watch optimistically as new therapies are in final stages of pre-clinical development or are beginning early-phase clinical trials. One of the challenges of these types of gene-based therapies entering human clinical trials is that a placebo-control approach [...]
Meet Zachary & Octane Toy Box! This #MemberMonday meet Dravet Superhero Zachary and Octane Toy Box! Octane Toy Box hosted the 4th Annual UTV Social Charity Fundraiser on August 16th, in Arlington, WA. The fundraiser was a huge success. They raised $2,000 for DSF while spreading much needed awareness. From the entire Dravet [...]
EPX-100 Phase II Clinical Trial Enrollment Epygenix Therapeutics invites children with Dravet syndrome to participate in a Phase II Clinical Trial In a Phase II, multicenter, randomized, double-blind, placebo-controlled study Epygenix will test the investigational drug, EPX-100 (Clemizole Hydrochloride, oral solution), as an adjunctive therapy for children with Dravet syndrome (2-17 years old) [...]
Dash for Dravet: Virtual Event Before the feast, get your family and friends together for our 5th Annual Dash for Dravet on Turkey Day! This is a virtual 5K so it can be accomplished anywhere in the United States Run, walk, jog, roll or treadmill at your pace. Burn off calories before [...]
DSF Disaster Relief Fund FAMILIES AFFECTED BY NATURAL DISASTERS DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. In addition to this program, we have also established the DSF Disaster Relief and Recovery Fund for patients with [...]
2020 Day of Dravet Registration is Open Join the DSF Family Network for our 4th Day of Dravet event on Saturday, October 17th. DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a [...]
Twenty years ago, in March 2000, the National Institute of Neurological Disorders and Stroke (NINDS) along with the American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE), the Epilepsy Foundation, and the National Association of Epilepsy Research Centers co-sponsored a White House initiated conference, Curing Epilepsy: Focus on the Future. One of the [...]
EpyGenix Therapeutics, in partnership with Greenlight Clinical, is currently enrolling a Phase II, multicenter, randomized, double-blind, placebo-control clinical trial for EPX-100 (Clemizole Hydrochloride, oral solution) in children diagnosed with Dravet syndrome. In January 2020, Epygenix announced the completion of Phase I trials for EPX-100, establishing the safety of EPX-100 in healthy subjects and clearing the [...]
Just last month, a previous research review detailed how Stoke Therapeutics developed their targeted augmentation of nuclear gene output (TANGO), utilizing anti-sense oligonucleotides (ASOs) to upregulate expression of several genes, including SCN1A, in human cells and mouse brain. ASOs are single-stranded RNAs that bind to target RNA sequences and have the potential to alter the [...]
