Decoding Dravet Blog

Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.

Curing Epilepsies recap 2021, image of brain

A Recap of “Curing the Epilepsies 2021”

On January 5-7, 2021, the NIH/NINDS (National Institute of Health/ National Institute of Neurological Disorders and Stroke) held the“Curing the Epilepsies 2021: Setting Research Priorities” conference in a virtual format. The goal of the conference was to guide updates to the current Epilepsy Research Benchmarks and Transformative Research Priorities with collaborative feedback from all the …

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serotonin under magnifying glass

Lorcaserin Enters Clinical Trials for Dravet Syndrome

Serotonin (5-HT) signaling has been a major focus of drug development targeting seizures in Dravet syndrome (DS) in recent years. For example, the community recently saw the FDA-approval of Fintepla (fenfluramine) as an adjunctive (add-on) therapy for DS. Fenfluramine had been a known anti-epileptic agent since the 1980’s, particularly utilized in Europe, but its marketing …

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corona, coronavirus, virus

Coronavirus Disease (COVID-19) Questions & Answers for the Dravet Community

Original Post:  March 13, 2020 Updated:  April 9, 2020 Dravet Syndrome Foundation (DSF) has updated these FAQs from our good friends and collaborators at the Tuberous Sclerosis Alliance to address concerns from the Dravet) community and healthcare professionals regarding the COVID-19 outbreak. For more comprehensive and up-to-date information refer to the Centers for Disease Control and Prevention (CDC) website. SYMPTOMS …

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Ciara’s Spirit of Hope Award Nominations Now Open!

Nominations are now open for the 2020 Ciara’s Spirit of Hope Award! I hope you will consider nominating an individual whose dedication through their volunteerism to DSF has been outstanding and inspiring to you.  From 2010-2015 the Spirit of Hope award was presented to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash, which was named …

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woman crying

The Emotional Toll of Having an Ill Child: 6 Myths About PTSD

This week’s guest blog post comes from Katie Holcomb. Katie is the Manager of PTSD and Coping Initiatives for Ryan’s Case for Smiles, a non-profit dedicated to helping children and their families cope with life changing illnesses and injuries today, while building resilience for the future. In short, to feel better to heal better. She …

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