Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

November is National Epilepsy Awareness Month

By |2020-04-06T14:08:59-05:00October 25th, 2019|Categories: Decoding Dravet Blog|

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 [...]

SUDEP Action Day is October 23rd!

By |2020-04-06T14:01:23-05:00October 18th, 2019|Categories: Decoding Dravet Blog|

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 [...]

ENDYMION Trial Update

By |2019-10-16T14:42:19-05:00October 16th, 2019|Categories: Research / Treatments|

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 [...]

Fintepla NDA Resubmitted

By |2019-10-16T14:43:00-05:00October 16th, 2019|Categories: Research / Treatments|

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 [...]

Day of Dravet Registration

By |2019-10-16T14:38:42-05:00October 16th, 2019|Categories: DSF Programs|

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. [...]

Baxter Women in Business

By |2019-10-16T14:44:09-05:00October 16th, 2019|Categories: Our Community|

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 [...]

Fenfluramine HCl (Fintepla®) Provides Long-Term Clinically Meaningful Reduction in Seizure Frequency: Results of an Open-Label Extension Study

By |2019-10-10T09:44:24-05:00October 10th, 2019|Categories: DSF Research Review|Tags: , , |

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 [...]

dCas9-based Scn1a gene activation restores inhibitory interneuron excitability and attenuates seizures in Dravet syndrome mice

By |2019-10-10T09:51:34-05:00October 10th, 2019|Categories: DSF Research Review|Tags: , , |

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 [...]


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