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.
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 …
Wow – what a year! I think we can all agree that 2020 was hard. Even for our community that is accustomed to constantly having to adapt and change plans, as well as go through periods of social isolation for the health and well-being of our loved ones, 2020 presented challenges that none of us …
Let everything happen to you Beauty and terror Just keep going No feeling is final -Rainer Rilke How would you feel if your son called you in the middle …
Being a grandfather of a child with Dravet syndrome Read More »
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 …
Lorcaserin Enters Clinical Trials for Dravet Syndrome Read More »
I often reflect on the amount of time spent traveling to and from the numerous doctor and therapy appointments with my son over the years. Negotiating my work schedule, coordinating school and therapy schedules, packing medical equipment and medicines, loading my son and his wheelchair into the car, making the sometimes-long drives to the clinic, …
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 …
Coronavirus Disease (COVID-19) Questions & Answers for the Dravet Community Read More »
It is not uncommon in a rare disease like Dravet syndrome (DS) to have a physician prescribe a medication for “off-label” use by their patient. This means that the drug is not being used in the manner specified in the FDA’s approved package labeling and is being used for a disease that it is not …
Belviq recall and off-label use in the Dravet community Read More »
The International Classification of Disease (ICD) is a list first introduced in 1948 by the World Health Organization (WHO) and is coordinated by the Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC). It is a system used by healthcare providers to classify and code diagnoses, symptoms, and …
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 …
Ciara’s Spirit of Hope Award Nominations Now Open! Read More »
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 …
The Emotional Toll of Having an Ill Child: 6 Myths About PTSD Read More »
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