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.
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 […]
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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
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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
Marlins for Mason Update! Read More »
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
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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
Pindar Van Arman Auction benefiting DSF Read More »
Haga clic aquí para 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
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Haga clic aquí para 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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Haga clic aquí para leer en español In January 2023 I had the pleasure of joining the DSF team as the DEI Coordinator. The acronym ‘DEI’ may not be familiar to all, so let’s take a dive into each letter to understand what exactly DEI is. DEI stands for Diversity, Equity, and Inclusion: Diversity: the
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The First Annual Marlins for Mason Billfish Release Tournament will be held August 4th and 5th in Ocean City, Maryland. Marlins for Mason is a non-profit marlin release tournament benefitting the Dravet Syndrome Foundation. Mighty Mason Prather is a 5-year-old Dravet warrior who lives in Ocean City, Maryland. Mason had his first seizure at 4 months old and was diagnosed
