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.
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 »
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 »
As you may know, this month, the Dravet Syndrome Foundation (DSF) released an updated brand identity, which includes a new logo, colors, and font. We have refreshed our logo to reflect who we are today and to symbolize our future. We believe the new look reflects the Foundation’s growth since 2009 and emulates our large
How to Use the New DSF Logo Read More »
There is just one-week left to register and join us at this year’s DSF Family & Professional Conference in Fort Worth, Texas, on June 23-25th, in collaboration with Cook Children’s Medical Center. While this event is important for all of our community stakeholders, it is such a special opportunity for our patient families. Along with a fantastic line
2022 Conference Countdown! Read More »
