Decoding Dravet
Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. This 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.
Join DSF as we go Behind the Mystery of Dravet Syndrome!
As part of Dravet Syndrome Awareness Month this June, we were pleased to partner with The Balancing Act on their Behind the Mystery episode highlighting Dravet syndrome. Behind the Mystery is a special segment dedicated to revolutionizing the way [...]
DSF Parent Ambassador Introductions – Part 2
Last week, I had the honor of re-introducing our veteran Parent Ambassadors and introducing our newest Parent Ambassadors from the Midwest. This week, it is my pleasure to continue those introductions and hope you’ll join me in welcoming our [...]
DSF Parent Ambassador Introductions – Part 1
In April 2016, just 6 short years ago, we received the devastating news that our (then) 2 year old son had an SCN1A gene mutation. Later diagnosed with Dravet syndrome, our lives were forever changed. We’ve gone through every [...]
Join DSF for Storytelling Sessions
As our community knows, rare diseases don’t receive as much attention from researchers or funders like diseases that affect larger populations. Most people do not know about Dravet syndrome unless they are directly connected to it in some way. [...]
Welcome to our New Board Members!
We are excited to welcome our three new board members who began their 3-year term of service on April 15, 2022. Learn more about them below and join us in welcoming them to #teamDSF! [...]
Wings of Hope Butterfly Release
DSF is excited to be hosting its 2nd butterfly release, Wings of Hope, on June 25, 2022.This butterfly release will honor those living with Dravet syndrome, celebrate hope, and remember those who have passed. The release will take place [...]
