Decoding Dravet Blog

I am proud to share our 2023 Annual Report that showcases the accomplishments of the year, made possible by the generosity of our donors. From our humble beginnings, the focus of DSF has remained steadfast – advancing our collective understanding of Dravet syndrome, providing support and advocacy, securing new treatments, and tirelessly working towards finding […]

Dear Friends of Dravet Syndrome Foundation (DSF), In the journey of making a difference in the lives touched by Dravet syndrome, every contribution holds the power to bring about change, hope, and progress. While cash donations are always appreciated and put to good use, there’s a world of giving that goes beyond writing a check

Several DSF staff members from our Patient Advocacy Team went to Washington, DC last month to participate in Rare Disease Week on Capitol Hill. This event, sponsored by EveryLife Foundation for Rare Diseases / Rare Disease Legislative Advocates, was a great opportunity for us to learn more about issues that impact our community and what

I have attended two Dravet syndrome educational conferences – the first one was in 2010 in Connecticut, and the second one was DSF’s Family and Professional Conference in 2022 in Fort Worth, Texas. I learned so much at both conferences and made so many Dravet friends at both. As a parent of an adult with

The 2024 DSF Family & Professional Conference will take place from June 20-22 at the JW Marriott Minneapolis Mall of America, just 2.5 miles from the Minneapolis-St Paul International Airport. This 3-day event is crafted to bring together all stakeholders dedicated to enhancing the quality of life for individuals with Dravet syndrome – including families,

  This little body held a secret. Eight days after this picture was taken, on February 16th, 2014, this little boy would have his first seizure on a chilly Sunday afternoon while on a walk in his stroller with mom and dad.  Over the next 10 months we watched him seize, turn blue, take medication,

In a world where social media is omnipresent, an organization and company’s need to create social media brand ambassadors within the platforms is becoming more and more apparent. In a global poll, Statista.com looked at social media users and where they get most of their news information. A whopping 48% of people in the United