Decoding Dravet Blog

From 2010-2015, Ciara’s Butterfly Bash annual fundraising gala was named in honor of DSF Founder Lori O’Driscoll’s daughter. In January 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy). Ciara’s courage and positive attitude in fighting Dravet syndrome made her a symbol of hope and inspiration to countless others. Her perseverance and strength […]

After having to postpone our scheduled conference in 2020, we are excited to be able to gather face-to-face again this June in Fort Worth, Texas. From June 23rd to 25th we have a full schedule that you won’t want to miss! Here are 5 reasons you will want to be there: Educational opportunities. Nothing compares

In today’s blog we are recapping a recent publication by Cohen et al that reported the results of a study aimed at better understanding the relationship between quality of life and other measures of health and well-being in individuals with severe genetic developmental epilepsies (called developmental and epileptic encephalopathies, or “DEEs”). The Dravet Syndrome Foundation

What is soticlestat? Soticlestat is an investigational medication that is currently in Phase 3 trials for the treatment of seizures in Dravet syndrome (1). Soticlestat works differently than any other current anti-seizure medications. Soticlestat blocks a molecule called ‘cholesterol 24-hydroxylase’ or ‘CH24H’, an important part of the pathway that processes cholesterol in the brain (2).

Our Patient Assistance Grant (PAG) program has been a part of our advocacy efforts since our inception in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers the opportunity for families to obtain some of the needed equipment for their child or adult living with Dravet

Our annual Give Up Your Cup virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to raise funds and spread awareness by setting up a personal fundraising page,

Caregiver Appreciation Day is observed each year on the 3rd Friday in February. This year, on February 18th, we honor those who give endlessly of their time and energy to help their loved ones live better lives with Dravet syndrome, and we would like to draw attention to all that they do and sacrifice. We

A seizure is a medical emergency. A Seizure Action Plan (SAP) incorporates tailored guidelines on how to respond during a seizure. It includes patient-specific information that can assure quick and appropriate intervention. The second annual Seizure Action Plan Awareness Week, sponsored by the SAP Coalition, runs from February 14-18, 2022, with the intent to raise awareness

The last several years have been an exciting time for the development of new options for seizure rescue medications. Some of the biggest advancements have not necessarily been new medications, but new ways to deliver the medications that might enable patients and their families to choose an option that works best for their situation. What