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.
We are grateful for our community this Thanksgiving. Our patient families, leaders, staff, clinicians, researchers, and industry partners make what we do every day possible. And for that, we are immensely thankful. For Our Board, Staff, and Volunteers: We are grateful to our many leaders who have shown up for our community – online and …
DSF is excited to announce our partnership with the Child Neurology Foundation and Unite Us, the nation’s leading technology company connecting health and social care services, to launch a new program that will connect families in the Dravet syndrome community to vital resources. Intended to fill a gap reported by families, this partnership is a …
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 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 »
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