Upcoming EL-PFDD Meeting February 3rd!
Upcoming EL-PFDD Meeting February 3rd!
Epilepsy is one of the least understood of all neurological diseases, and yet it is the fourth most common. We know that one in 26 people will be diagnosed with epilepsy and that over 65M people worldwide suffer from epilepsy. One-third of those with epilepsy experience uncontrollable seizures because there is no currently available treatment [...]
One of the top concerns for caregivers in the Dravet syndrome (DS) patient community is Sudden Unexpected Death in Epilepsy (SUDEP). Of the almost 20% mortality rate within the DS population, roughly half of those deaths are attributed to SUDEP. This is a terrifying statistic and our families live in constant fear for the safety [...]
ENYDMION Trial Reports Positive Initial Data Ovid Therapeutics recently announced positive initial data from the ENDYMION trial, Phase 2 open-label extension study of soticlestat (OV935/TAK935) in patients with rare developmental and epileptic encephalopathies (DEE) such as Dravet syndrome and Lennox-Gastaut syndrome (LGS). Soticlestate is a potent, highly-selective, first-in-class inhibitor of the enzyme cholesterol [...]
Zogenix Resubmits New Drug Application Zogenix, Inc. recently announced that it has resubmitted its New Drug Application (NDA) for FINTEPLA® (ZX008, fenfluramine) for the treatment of seizures associated with Dravet syndrome to the U.S. Food and Drug Administration (FDA). The NDA is based on data from two pivotal Phase 3 trials and an [...]
2019 Day of Dravet Registration is Open 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 part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. [...]
Dash for Dravet: Virtual Event Before the feast, get your family and friends together for our 4th 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 [...]
Thank You Baxter Women in Business! Baxter Women in Business is a group of women in the Baxter Village area of Fort Mill, SC. Their focus is on supporting their neighborhood by helping fellow women in business and offering their services to Baxter Village and surrounding communities. The Baxter Women in Business hosted [...]
Each November, DSF challenges you to Dash for Dravet on Turkey Day! Our annual virtual race takes place the week of Thanksgiving, and can be accomplished from any location you choose. You can walk, jog, or roll on the road, on the treadmill, or at the gym. And anyone can participate - young or old, [...]
This is a report on results from an open-label extension study of fenfluramine in children and young adults (2–18 years old) with Dravet syndrome. "Open-label extension" means that the participants have participated in the Phase 3 clinical trial and are continuing with the drug, but can know information that was previously blinded, such as [...]
Our chromosomes are paired, and therefore we have two copies of almost every gene. The mutations that cause Dravet Syndrome affect only one copy of the Scn1a gene, which leads to production of only half the normal amount of Nav1.1 protein. New gene therapy approaches are starting to have success replacing mutated gene copies [...]
