Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
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 […]
Host a Family Gathering with a Caregiver Connect Grant Read More »
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
Be sure your child’s school team is seizure-ready! Read More »
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.
Virtual DSF Steps Toward a Cure Read More »
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
2022 Day of Dravet Virtual Workshop Read More »
A recent publication from Tanenhaus et al details the preclinical work by Encoded Therapeutics that has led to the development of a potential gene regulation therapy for Dravet syndrome. The study, published in the journal Human Gene Therapy in June, shows proof-of-concept that their approach, ETX101, can be delivered to the correct cells in the
Preclinical Development of a Gene Therapy for Dravet Syndrome Read More »
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
Dravet Syndrome Voice of the Patient Report Read More »
The Dravet Syndrome Foundation (DSF) held a Family & Professional Conference in Fort Worth, Texas on June 23-25 of 2022 in collaboration with Dr. Scott Perry and Cook Children’s Medical Center. DSF generally holds these conferences every 2 years, although due to the COVID-19 pandemic, there has not been an in-person conference since 2018. Needless
2022 DSF Family & Professional Conference Recap Read More »
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,
Join us this July and August in Cycling for a Cure! Read More »
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
Every family’s Dravet syndrome journey is unique, which is why we updated our website today to best serve our community, meeting each individual where they are on their family’s medical journey. Whether you’re navigating a new diagnosis or well-acquainted with Dravet syndrome, we’ve made sure that we’re here for you every step of the way.
The New DSF Website is Here! Read More »
