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.
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 …
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 …
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 …
The First Annual Marlins for Mason Billfish Release Tournament was held August 4th and 5th in Ocean City, Maryland with all proceeds from the event being donated to the Dravet Syndrome Foundation (DSF). Marlins for Mason is a non-profit marlin release tournament created by Amanda Prather (mother of Mighty Mason, Dravet Syndrome Warrior) and a committee …
The fulfillment of our mission is only possible thanks to the generous support of our community. But did you know that there are many unique ways to support our vital work, outside of a personal donation? Be a Fundraiser: Creating a personal campaign page gives you a chance to do something small, but make a …
We are honored to have the opportunity to auction off a custom painting created by Pindar Van Arman, an award winning AI artist who builds, codes, and experiments with robots that paint in a variety of styles. Pindar worked with Dr. M. Scott Perry to bring an AI project, Spikeangelo, to Cook Children’s Medical Center …
Haga clic aquàpara leer en español DEI what does it stand for? We recently discussed the letter ‘E’ and shared how Equity is a part of our community. To complete our discussion and meaning of this acronym, we will discuss the letter ‘I’. Inclusion: the act of being included In 2009 a group of parents started …
Haga clic aquàpara leer en español DEI what does it stand for? We recently discussed the letter ‘D’ and shared how Diversity is a part of our community. Continuing our discussion, we will discuss the letter ‘E’. Equity: the state of being equal, especially in status, rights, and opportunities In the late 1800s, the supreme court …
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