EPX-100 Phase II Enrollment

By |2020-09-15T10:40:46-05:00September 15th, 2020|Categories: Research / Treatments|

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) [...]

MONARCH Study Update

By |2020-08-17T14:48:44-05:00August 18th, 2020|Categories: Research / Treatments|

First patient dosed with STK-001 in Part A of Phase 1/2a MONARCH clinical trial Stoke Therapeutics recently began the Monarch clinical trial and just announced that they have successfully administered STK-001 to the first patient in their trial. STK-001 is a novel disease-modifying therapy that utilizes RNA antisense oligonucleotides (ASOs) to restore levels [...]

MONARCH Study Phase 1/2a

By |2020-07-15T13:08:01-05:00July 15th, 2020|Categories: Research / Treatments|

Stoke Therapeutics Launches MONARCH Study The MONARCH Study, conducted by Stoke Therapeutics, is currently enrolling for a Phase1/2a trial of STK-001. This new therapeutic medicine acts to specifically increase the number of healthy sodium channels (Nav1.1) that are impacted by mutations in SCN1A gene, the most common cause of Dravet syndrome. The study [...]

FINTEPLA FDA Approved

By |2020-07-15T13:04:24-05:00July 15th, 2020|Categories: Research / Treatments|

FINTEPLA® Receives FDS Approval for Treatment in Dravet Syndrome On June 25,2020, the FDA approved FINTEPLA® (fenfluramine) oral solution for the treatment of seizures in Dravet syndrome for patients 2 years and older. As part of the approval, the FDA required a black box warning on the medication. Additionally, the FDA requires the [...]

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 [...]

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