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 […]
Updated Professional Education Video Series Read More »
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
Bereavement Resources Read More »
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
Gobble, Gobble. Dash for Dravet is back! 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 »
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 »
McCall was born August 28, 2018- perfectly healthy, without any complications. Four of the sweetest months later, still nestled in her car seat at her well check appointment, her arm began to rhythmically bounce up from her lap and fall back down. Her pediatrician immediately, but charily, slipped out of the room to call the
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 »
