Decoding Dravet Blog

Much has changed in the field of Dravet syndrome since the inception of DSF in 2009. In 2018, DSF debuted its 5-year strategic plan to articulate the long‐range direction and priorities for our foundation and patient community. The content for this strategic plan was derived by examining the Dravet syndrome landscape. We listened to a […]

Being the parent of a child with Dravet syndrome can be lonely and isolating. It’s easy to feel like no one else “gets it”, that no one else understands our day to day experiences or the challenges we face… No one else, except another Dravet family. This past July, in Edmonds, Washington, a small beach

Having a child with Dravet syndrome attend school can pose many challenges and concerns for parents. It is important that you give the school staff the information and training they will need to keep your child safe. A great place to start is the Seizure Action Plan (SAP) Coalition Virtual Backpack. It is a one-stop

While we are excited to have some of our Steps Toward a Cure events happening back in person this year, we have decided to continue to offer our Virtual Steps Toward a Cure option for those who are unable to attend a live event. This virtual event offers you flexibility to make it your own.

Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. This year’s one-day workshop takes place on Saturday, September 24th

DSF has released its Dravet Syndrome Voice of the Patient report, summarizing outcomes from a February 2022 Externally Led Patient Focused Drug Development (EL-PFDD) meeting. For the first time ever, parent caregivers and family members were able to share the lived experience of patients living with Dravet syndrome. Parent caregivers and family members shared riveting stories

Whether you are a beginner on the bike or a seasoned cyclist, our Century Ride is the challenge for you!  Many cyclists love pedaling dozens or hundreds of miles to relax, de-stress, exercise, take in the beautiful scenery – and now they can cycle and support DSF. Our Century Ride (100 miles) is a fun,

The Kuhn family has a 2-year-old daughter named Cora with Dravet syndrome. Since diagnosis in February of 2021, Cora has experienced over 12 hospitalizations due to unstoppable and life-threatening seizures that needed medical intervention. Cora’s mom, Jen, decided in October 2021 to donate her hair to a child’s cancer organization and also to dye it