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Calvin’s Story

Personal StoryCalvin is my hero, my little muse, my inspiration and the one who makes me want to be a better person every day.

Charlie’s Story

Personal StoryFor me, the hardest part of Charlie’s seizures was seeing his eyes. You don’t hear much about the eyes.

Infantile Spasms: Mechanisms and Consequences as Therapeutic Targets

Grants AwardedThis commentary discusses three aspects of IESS intended to raise fundamental clinical and mechanistic issues to afford greater understanding of the syndrome – nomenclature, EEG findings, and selected emerging animal models that might shed light on IESS pathophysiology and guide therapy development.

A Novel Transposon Causes Focal Cortical Dysplasia

Grants AwardedIf our data is correct, the future for patients with FMCD may include targeted therapy to cure HPV16 infection that could lead to truly new and successful treatment strategies with improved efficacy (“no seizures”) and diminished morbidity (“no side effects”).

Molecular Mechanisms Of Epilepsy-Causing Mutations In The IKM Channel: Anti-Epileptic Effect Of Polyunsaturated Fatty Acids (PUFAs) Variants Rene Barro Soria, Phd

Grants AwardedThe goals of the present research project are a) to define the molecular basis of voltage activation of IKM channels, to understand the mechanisms by which epilepsy causing mutations affect IKM channels function and b) to design new drugs for the treatment of these IKM channelopathies.

Functional And Clinical Evaluation Of NMDA Receptor Mutations In Epileptic Encephalopathy

Grants AwardedThey will monitor seizure type and frequency, EEG, and developmental assessment before and after off-label treatment with FDA-approved NMDAR inhibitors.

Fintepla Safely Reduces Seizures in Children Younger than 2, Study Finds

ResearchTreatment with Fintepla (fenfluramine) appeared to be reasonably safe and lower seizure frequency in five children with Dravet syndrome who started on the therapy before they were two years old.

High-Powered Magnets on the Brain Help Control Seizures in Dravet Mice

Research"We believe that tSMS is emerging as an affordable, simple, safe and promising therapy for Dravet patients, alone or complementing the partial effectiveness that has been obtained with other treatments.”

Little Impact on Children’s Height, Weight With Long-term Fintepla

ResearchDespite Fintepla’s active ingredient being fenfluramine — a medicine initially developed to suppress appetite — the data showed that children on long-term treatment had growth comparable to that of same-aged patients not on the therapy.

Adrenocorticotropic Hormone, Oral Steroids Superior for New-onset Infantile Spasms

ResearchAdrenocorticotropic hormone and oral steroids demonstrated superiority compared with non-standard therapy for the initial treatment of infantile spams in a prospective, multicenter observational cohort study published in Neurology.