October 12  , 2022

Dear Friends,

As we continue to make advancements in research and treatment for Dravet syndrome, we are hopeful that more and more of our Warriors will make it to adulthood. We're creating additional resources and information for adults with Dravet syndrome because the characteristics of Dravet syndrome often change in adulthood. Different therapeutic approachs or increased care may be needed as the patient ages. However, studies and information for adult patients are still limited.

This is why we added resources for adults with Dravet, such as "Creating a Longterm Care Plan" and "Developing a Lifelong Support Network." We hope that these resources will help and educate our patients, families, supporters, and medical experts to better understand Dravet syndrome in adults and the care changes that may be needed.


Dravet Syndrome Foundation


Transitioning from School to Adulthood Planning Guide

Transitioning to adulthood is a complex, confusing, and often emotional process. For each Dravet patient family, the process will look and feel very different because the wants and needs of each young adult differ, as well as their limitations.

That's why we have created a transition planning guide to assist parents through the often intimidating process of transitioning out of high school/educational entitlement into the world of adult services.

We encourage you to review this planning guide to help you through the process and, of course, lean on your family, friends, and the broad Dravet patient community to help you navigate this new journey!


Dads Meet Up

David Hirsch, founder and creator of the Special Fathers Network — a dad-to-dad mentoring program for fathers raising children with special needs — is looking to bring Dravet dads together this winter. Beginning in 2023 (January-June), David will be hosting a monthly virtual Dravet Dads Meet Up. Learn how to join along here.

Get Your Swag

Did you know that November is Epilepsy Awareness Month? By purchasing a t-shirt or sweatshirt, you can help us raise awareness of Dravet syndrome while showing your support for the programs and efforts of the Dravet Syndrome Foundation (DSF). Hurry - this fundraiser closes on October 17! Check out the available merchandise here.

Research Studies

Research is our best hope for advancing treatments and eventually finding a cure for Dravet syndrome and associated epilepsies. Research is not just the responsibility of scientists and doctors. It is important that patients participate to whatever extent they are able as well. See what current research studies are available for you here.



News and Events

  • Steps Toward a Cure - Steps Toward a Cure is a series of family-friendly events that raise awareness and funds while celebrating our Dravet superheroes. These events take place throughout the year, primarily in the fall, in communities nationwide. See our upcoming events here.
DSF moderates private support groups for parents and caregivers of loved ones with Dravet syndrome.
These are great resources for families to ask questions and find support. 
Learn more

DSF is proud to be a GuideStar Platinum Nonprofit Profile participant.
Platinum lets us show quantitative metrics on the progress we’re making toward our mission!
Learn more


Dravet Syndrome Foundation
PO Box 3026  | Cherry Hill, New Jersey 08034
203-392-1955 | info@dravetfoundation.org

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