Decoding Dravet Blog

2024 is proving to be a promising year for the advancement of targeted therapies for Dravet syndrome, including some newly enrolling clinical studies to investigate a novel genetic-based therapy from Encoded Therapeutics which we will discuss further in today’s blog post. Dravet syndrome is caused by mutations in one copy of the SCN1A gene, which […]

This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF: 15 years of funding groundbreaking research.  15 years of connecting and supporting families. 15 years of raising awareness of Dravet

In a world where thousands of causes are vying for attention and support, T-shirt fundraisers have emerged as a powerful tool in the realm of fundraising. You can see this by looking in anyone’s closet and if you’re like me, your drawer is filled to the brim with shirts from all different kinds of causes.

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,