Each year, we reflect on our mission statement and the steps we've taken to improve the lives of Dravet Syndrome families. What did we accomplish in these last 365 days?
Together, we funded research — from a postdoctoral fellow investigating genetic therapy preventing seizures to a groundbreaking study on gait and movement issues in adult patients.
We hosted our 5th biennial conference, bringing together over 300 family members, researchers, clinicians, and industry partners to hear the latest on research and clinical care for Dravet syndrome.
We worked on a specialized segment of The Balancing Act on Lifetime, following a Dravet family from diagnosis into their treatment journey, bringing national attention to our rare disease.
We improved our website, making it more inclusive — with A.D.A. accessibility and website translation capabilities — so more people could access our resources. We updated the physician and comprehensive care center directories to connect families to vital services. We streamlined new caregiver resources, an educational video library, and an informative news page to make it easier for individuals to find what they need.
But our most important work as a community occurs at the individual level. When a family receives a new diagnosis of Dravet syndrome and lands on our site, we all figuratively take their hand. We help them make sense of the Dravet syndrome landscape and connect them to families who are currently walking this path so they can exchange information and ideas.
Take a moment to reflect, too. Thank you for your ongoing support this year. We could not do this vital work without our community.
Dravet Syndrome Foundation