Decoding Dravet Blog

We are proud to be participating in the first-ever DAF Day: a new day of giving designed to educate and inspire individuals to donate through their Donor Advised Funds. What Is a Donor Advised Fund (DAF)? A donor advised fund (DAF) is a charitable savings account that gives you the flexibility to recommend grants to […]

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

Research advancements have led to improvements in clinical care and the development of novel treatments for Dravet syndrome (DS). Despite being rare, DS is one of the most well-studied genetic epilepsies. DSF and the Dravet community have played a large part in these advancements. DSF’s ability to fund over $9 million in research has only

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