VALTOCO® Nasal Rescue

By |2020-01-15T11:42:51-05:00January 15th, 2020|Categories: Research / Treatments|

VALTOCO® Nasal Rescue Neurelis, Inc., recently announced the U.S. Food and Drug Administration (FDA) has approved VALTOCO® (diazepam nasal spray) as an acute treatment of intermittent stereotypic episodes of frequent seizure activity (i.e., seizure clusters, acute repetitive seizures) that are distinct from a patient's usual seizure pattern in people with epilepsy 6 years [...]

NAYZILAM®Nasal Rescue

By |2019-12-16T17:54:08-05:00December 17th, 2019|Categories: Research / Treatments|

NAYZILAM® Nasal Rescue Availaibility UCB recently announced availability of NAYZILAM® (midazolam) Nasal Spray CIV in retail pharmacies. NAYZILAM is the first and only nasal rescue treatment for seizure clusters in the U.S. It is a ready-to-use solution that can be used when and where a seizure cluster occurs and can be administered by [...]

2019 Grant Awards

By |2019-12-16T17:00:40-05:00December 17th, 2019|Categories: Research / Treatments|

2019 DSF Grant Awardees DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that [...]

Peer Support Workshop

By |2019-11-14T09:48:25-05:00November 15th, 2019|Categories: Research / Treatments|

Peer Support Best Practices Workshop DSF is excited to partner with The Child Neurology Foundation on their upcoming Peer Support workshop! CNF, along with their co-host, the American Epilepsy Society, is inviting non-profit staff in the child neurology space who are interested in the peer support model. The workshop will be held December [...] Relaunch

By |2019-11-14T08:44:29-05:00November 15th, 2019|Categories: Research / Treatments| Website Re-Launch Families who take on rare and severe forms of epilepsy deserve more. That’s why we’re excited to let you know Greenwich Biosciences has enhanced its site,, with more resources and more uplifting stories than ever to serve the needs of our resilient community. A new, easy-to-navigate design makes it [...]

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 [...]

Breastfeeding Research Survey

By |2019-09-13T11:45:31-05:00September 15th, 2019|Categories: Research / Treatments|

Breastfeeding Research Survey Dr. Douglas Nordli and colleagues at The University of Chicago are conducting a study on Breastfeeding and its impact in Dravet syndrome. This research project aims to find the association between breastfeeding practices and age of onset, severity, morbidity and mortality in patients with Dravet syndrome. This non-interventional, anonymous study [...]

Epygenix IND Approval

By |2019-08-12T10:44:39-05:00August 15th, 2019|Categories: Research / Treatments|

Epygenix Therapeutics Receives IND Approval Epygenix Therapeutics, Inc., a precision medicine-based biopharmaceutical company,  announced that they have received an Investigational New Drug Application (IND) approval from the U.S. Food and Drug Administration (FDA) for the treatment of patients with Dravet syndrome. EXP-100 is a first-generation antihistamine safely used to treat itch in the [...]

Stoke Orphan Drug

By |2019-08-12T15:28:14-05:00August 15th, 2019|Categories: Research / Treatments|

Stoke Granted Orphan Drug Designation Stoke Therapeutics announced that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation to its lead product candidate, STK-001. STK-001 is an investigational new treatment that has the potential to be the first disease-modifying therapy to address the underlying genetic cause of Dravet syndrome. It [...]