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.
Last week, I had the opportunity to attend the 2023 Park City Epilepsy Meeting and an open house for the NIH/NINDS Epilepsy Therapy Screening Program (ETSP) contract site at the University of Utah. DSF was proud to sponsor the Park City Epilepsy Meeting this year, which focused on cutting-edge approaches to transform epilepsy therapies. Take-aways […]
Park City Epilepsy Meeting Recap Read More »
In 1896, Buffalo, N.Y. hosted the first-ever Turkey Trot. Only six runners participated in this holiday race, and they ran five miles down dirt roads in downtown Buffalo. In the early 1900’s the course was moved to pavement, but women did not compete until 1972. Year after year, runner participation increased in the original turkey
What is a Turkey Trot and where did it start anyway? Read More »
Please join us in welcoming our two newest board members, Dr. Gail Farfel and Dr. Bill Kirshner, who will help guide the foundation’s mission Those who serve on our Board of Directors do so on a voluntary basis, without compensation. We appreciate each of them sharing their gifts and talents with the organization. Gail Farfel,
Welcome our Newest Board Members! Read More »
We are excited to add three new staff members to help us better serve our patient community. Join me in welcoming Shannon Cloud, Rich Maxey, and Austin Watson to #teamDSF! Shannon Cloud – Patient Advocacy Director Shannon lives in Smyrna, GA with her husband Blaine and their three children. Their oldest child, Alaina, had her
Welcome our Newest Staff Members! Read More »
Since joining the Dravet Syndrome Foundation staff in late 2022, I have had the privilege of meeting so many families who are all desperate for the same thing: a cure! As a Dravet mom myself, I share in those sentiments. Ever since my daughter, Eden, had her first seizure in 2014 I have been desperate
#CureDravet T-shirt Campaign Read More »
The 5th annual Dance for Dravet will take place on Friday, October 6th at Third Degree Glass Factory in St Louis, Missouri. Started in 2019 by the Brennan and Odlaug families, the event was designed to raise awareness of Dravet syndrome and raise funds for DSF, in honor of family member Anna Odlaug who is
5th Annual Dance for Dravet – October 6th! Read More »
Model systems have allowed researchers to study Dravet syndrome in ways that would not be possible in a human patient. Uncovering the genetic cause of Dravet syndrome (mutations in the SCN1A gene) enabled the development of animal models carrying similar mutations and displaying characteristic symptoms of Dravet syndrome. These animal models include flies, zebrafish, mice,
DSF is creating a biobank of patient-derived iPSCs Read More »
As you think about your charitable giving this year, you might have additional opportunities to help reduce your taxes, while maximizing your support for DSF. Here are some ways to give back that are better than cash and will help you make the most of your donation. Donor Advised Fund (DSF) Grants Donor Advised
Smart Ways to Support DSF Read More »
Our biennial Day of Dravet workshops kick off on September 16th, in Denver, Colorado. Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those
There is still time to register for a Day of Dravet workshop! Read More »
We are The Watsons, from Bucks County PA. Our family decided that this was our year to give back to the DSF and Dravet community by hosting Dance away Dravet in honor of our 7 year old daughter Emma, who is living with Dravet syndrome. We wanted our event to encompass all parts of who
Dance away Dravet – September 16th! Read More »
