Soticlestat Trial Update

By |2020-06-15T14:39:57-05:00June 16th, 2020|Categories: Research / Treatments|

Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). When there is too much 24HC in [...]

Call for Research Proposals

By |2020-05-14T11:18:32-05:00May 15th, 2020|Categories: Research / Treatments|

Applications Due September 4, 2020 The 2020 DSF Research Grant Program is open! Our Research Grant Program was established in 2010 to support investigator sponsored research in the field of Dravet syndrome, which historically has been critically underfunded. Our goal is to support and promote innovative approaches in Dravet syndrome research across disciplines [...]

VALTOCO® Nasal Rescue Available

By |2020-03-18T11:24:15-05:00March 18th, 2020|Categories: Research / Treatments|

VALTOCO® Nasal Rescue Commercially Available Neurelis, Inc., recently announced the commercial availability of VALTOCO® (diazepam nasal spray) for the 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 adult and pediatric patients 6 years of age [...]

Belviq Market Withdrawal

By |2020-03-18T13:41:21-05:00March 18th, 2020|Categories: Research / Treatments|

Belviq Recall The pharmaceutical company, Eisai, recently withdrew Belviq (lorcaserin) from the market at the request of federal regulators. Some members of our patient community began taking Belviq off-label, after reports that it potentially helped with seizure control, even though it received FDA approval as a weight-loss drug. The abrupt withdrawal of Belviq [...]

2017 Research Grant Publication

By |2020-02-17T11:24:23-05:00February 17th, 2020|Categories: Research / Treatments|

2017 Research Grant Recipient Publication DSF is pleased to share that 2017 research grant recipient David R. Hampson, PhD, had his paper on gene therapy published in the journal "Gene Therapy." Dr. Hampson's grant, Exploring gene therapy to treat sudden unexpected death and other pathological features of Dravet syndrome had a goal to [...]

New ICD-10 Codes for Dravet

By |2020-03-10T12:54:40-05:00February 17th, 2020|Categories: Research / Treatments|

DSF is pleased to announce that we now have ICD-10 codes for Dravet syndrome. The International Classification of Disease (ICD) is a system used by healthcare providers to classify and code diagnoses, symptoms, and procedure recorded in conjunction with hospital care in the U.S., and it is important for health insurance reimbursement, administration, epidemiology, and [...]

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 [...]

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 [...]

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 [...]

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 [...]