Decoding Dravet Blog

Bereavement is a part of life, but in the world of Dravet syndrome, it can be a looming presence. For anyone who has lost their child, it is emotionally devastating and it is natural to go through a range of physical and emotional responses. There is no time limit on grief and how people process […]

Join our 7th annual Dash for Dravet on Thanksgiving Day! Before the feast, get your family and friends together for this virtual 5K (3.1 miles) that can be accomplished anywhere before, on or after Thanksgiving! You can run, walk, jog, roll or treadmill at your pace – there is no time limit. And, thanks to

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

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

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.