Mary Anne Meskis

Planning long-term care for a loved one with rare epilepsy or a developmental and epileptic encephalopathy (DEE), such as Dravet syndrome, can sometimes feel overwhelming. It’s natural to experience concern or anxiety as you plan for their future. Recently, DSF had the opportunity to work with UCB, along with the LGS Foundation, TSC Alliance, and […]

Supporting any of DSF’s T-shirt fundraisers can be a powerful way to make a difference. Each year, we organize two fundraisers: one to engage the community for Dravet Syndrome Awareness Month in June, and a second to raise awareness for Epilepsy Awareness Month in November.  This year we are excited to debut a design celebrating

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

Want to have fun while supporting DSF and raising awareness for Dravet syndrome? Join us at a Steps Toward a Cure event in your area!   DSF Steps Toward a Cure is a series of family-friendly events that raise awareness and funds while celebrating our Dravet superheroes. These events take place throughout the year, primarily

We are pleased to announce a new partnership between DSF and the Mason’s Movement Foundation. Founded in 2020 by Amanda and Matt Langford in memory of their son Mason, who had Dravet syndrome and tragically passed away from SUDEP, Mason’s Movement Foundation is dedicated to supporting bereaved families. One of their initiatives, The Good Mourning

As the Dravet syndrome patient community approaches the possibility of ASO and gene therapy advancements, DSF acknowledges the importance of proactive planning to ensure seamless patient access and insurance coverage when these treatments become available. This year, we launched our latest initiative, our Legislative Advocacy Program, aimed at ensuring that the concerns of our community

At this year’s conference, we honored five individuals whose dedication and active participation in our mission are helping to drive advancements in the field of Dravet syndrome. Continue reading to discover more about this year’s recipients and the impact they are making for the Dravet syndrome community. Impact & Legacy Award – Theron (Ted) Odlaug,