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.
It is no secret that mothers and female caregivers make up the majority of our Dravet Syndrome Foundation Parent and Caregiver Support Group. Our community is not unique in this way. We know that fathers and father-figures are a part of our community and DSF strives to better support them. Earlier this year, we welcomed […]
Dravet Dads Meet-Up Informational Kickoff Read More »
When the Dravet Syndrome Foundation was established in 2009, there were no specific treatments for patients with Dravet syndrome and limited guidelines on best treatment approaches. Despite the known genetic cause for the majority of cases, mutations in SCN1A, the idea of a genetic-based therapy seemed a distant possibility at that time. Things have changed
Genetic Therapy for Dravet Syndrome: 2022 State of the Field Read More »
When Dravet syndrome (DS) was first discovered by Dr. Charlotte Dravet in 1978, there was not a clear understanding of the expected lifespan for someone diagnosed with DS. Earlier diagnosis and advances in treatment have improved the prognosis and life expectancy of DS, meaning that more than 80% of patients will survive beyond the age
Transitioning to Adulthood for Patients with Dravet Syndrome Read More »
In July of this year, the US Food and Drug Administration (FDA) authorized the use of stiripentol (DIACOMIT) for patients with Dravet syndrome aged 6 months and older and taking clobazam (1). Previously, stiripentol was approved for patients aged 2 years and older in the US, which meant there could be a delay in access
Stiripentol (DIACOMIT): History and New Expanded Approval Read More »
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
DSF Strategic Plan Update 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 »
