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’s blog post was a brief overview about how the Family Network Ambassadors and the Brand Ambassadors function within our organization to help further the mission of DSF. But let’s dive deeper… The mission of DSF is what drives us as a foundation and a community. We continually look for ways to deepen this […]
What do DSF Family Network Ambassadors and Brand Ambassadors do? Read More »
When you are going through something hard it’s always good to know that there are people “in the same boat” as you are. And while I appreciate the sentiment I’m not sure that it is the best way to talk about the community that we have as families living with Dravet syndrome. I think that
DSF Family Network and Brand Ambassadors Read More »
Have you heard the news? Dravet Syndrome Foundation (DSF) has earned a Four-Star rating by Charity Navigator, their highest possible rating. Their third-party accreditation validates our organization’s operational excellence and our rating reflects our strong financial health and ongoing accountability and financial transparency. And, this rating designates DSF as an official “Give with Confidence” charity!
DSF is designated an official “Give with Confidence” charity by Charity Navigator! Read More »
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 »
