Decoding Dravet Blog

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

It’s almost that time of year again. Time for leaves changing, cool breezes, pumpkin everything and you guessed it… DSF Gala and Benefit Evenings. STOP! Don’t tune out yet thinking that this blog post isn’t for you! If you have a desire to help raise funds for research and want to be a part of

Dravet syndrome is a severe form of epilepsy that is primarily caused by mutations in the SCN1A gene, which encodes a sodium channel critical for the proper functioning of the brain. As a result, patients experience a multitude of challenges, including severe seizures, an increased risk of mortality, and developmental impacts on cognition, movement, and

Eisai recently communicated their decision to discontinue human trials and manufacturing of the experimental therapy, lorcaserin. The current Phase 3 trial has been discontinued and the Extended Access Program will end in November 2024. Patients will need to discontinue lorcaserin by October to complete final study visits no later than November. Unfortunately, there will no

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

I became involved with the Dravet Syndrome Foundation (DSF) to find a sense of control where there was none. Being active and trying to be part of a solution became a driving force for me. Grace was diagnosed with Dravet syndrome (DS) a couple of months after her first birthday and I felt shock, sadness,

“How is Cora doing?” is a typical question we get after our 4 year old daughter has had a seizure. It is a socially acceptable and appropriate question to ask a parent who has a medically complex kid. I wish I could say as the parent of that medically complex kid that the answer is