Decoding Dravet Blog

I never imagined I’d become the parent of a child with a rare disease. I never pictured a life built around emergency medications, seizures, feeding tubes, IEP meetings and hospital rooms instead of family fishing trips, soccer practices, and play dates. But when our son Mason was diagnosed with Dravet syndrome at just seven months […]

As Dravet Remembrance Day approaches on June 15th, we’d like to share a heartfelt blog post written by Blake Fish about her son, Bentley. Bentley was the kind of child who could change the entire atmosphere of a room just by walking into it. He had a spark about him; an undeniable charm, a brightness

June is almost here, and that means it’s time to break out the bold colors and stand up for a powerful cause – Dye It for Dravet is back! This annual fundraiser supports the Dravet Syndrome Foundation, helping raise both critical funds and awareness for individuals and families affected by Dravet syndrome. What Is Dye

Each year, Dravet Syndrome Awareness Month – observed from June 1 to 30 in the U.S. – provides a crucial opportunity to highlight the often-overlooked challenges and unmet needs of those living with Dravet syndrome. It is a meaningful time for the Dravet community to raise visibility, share stories, and ensure that the voices of

At DSF, we are guided by a commitment to transparency, accountability, and connection to our community. Each year, our annual report is more than just a summary of numbers – it’s a story of the lives we’ve touched, the progress we’ve made, and the vision that continues to guide our mission. Our 2024 Annual Report

DSF is proud to announce that it has once again received the Platinum Seal of Transparency from Candid, the highest level of recognition offered by the nonprofit information platform formerly known as GuideStar. This prestigious designation underscores DSF’s ongoing commitment to transparency, accountability, and trustworthiness. Candid’s Seals of Transparency – Bronze, Silver, Gold, and Platinum

Caring for a loved one with Dravet syndrome can lead to significant medical expenses. We understand that the need for support can arise at various stages, and we’re here to help when it does. The DSF Patient Assistance Grant (PAG) Program is designed to help by providing financial aid for essential medical equipment, ensuring patients

The Dravet Syndrome Foundation (DSF) is excited to open applications for the 2025/2026 Brand Ambassador Program! From May 1 to May 15, individuals from around the world are invited to apply and take part in a mission that is as personal as it is powerful: raising awareness for Dravet syndrome. Currently, there are 10 dedicated

A recent publication in the journal of Science Translational Medicine revealed a groundbreaking new approach to a genetic therapy for Dravet syndrome. The new scientific approach was developed and validated through a collaboration between researchers at Allen Institute for Brain Science and University of Washington’s Seattle Children’s Research Institute. The gene therapy was tested in

Around 1 in 5 children with my 6-year-old’s rare form of epilepsy die in childhood. I am regularly reminded of this reality when other caretakers in a Dravet Syndrome Foundation online support group post that they lost their precious child.  Just last week, a parent posted about her young daughter dying from a seizure. I can’t help