Decoding Dravet Blog

Support DSF while you save! We’re excited to announce that we’re partnering with Minted.com this holiday season to help us fundraise. You can support the Dravet Syndrome Foundation by ordering your holiday cards and gifts from Minted.com using our promo code FUNDRAISEDRAVET. You’ll get 20% OFF your order and 15% of every purchase made using […]

A signal of our organization’s growth and success is our need to add two new staff members to our team. We are excited to announce we are accepting applications for an administrative assistant and a fundraising assistant. Are you an administrative and/or fundraising professional with a passion for helping the Dravet syndrome community and making

National Epilepsy Awareness Month in November is an annual event that teaches people about epilepsy’s causes and symptoms. During this month, many organizations join together to provide information about prevention, treatment, research, and resources to fight epilepsy. DSF takes this opportunity each year to highlight Dravet syndrome and the complexities of this severe form of

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