September 28 , 2022

Dear Friends,

Dravet Syndrome Foundation is proud to be a new member of Epilepsy Alliance America! Epilepsy Alliance America is a growing national organization representing like-minded local, regional, statewide, and national agencies dedicated to serving the everyday needs of people who live with seizures and epilepsy.

We look forward to continuing to support those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures.

Stay tuned to see what we accomplish together!

Warmly,

Dravet Syndrome Foundation

 

DIACOMIT Patient Access Age Expansion

DIACOMIT (stiripentol) is now approved for seizure treatment for patients six months and older with Dravet syndrome.

In July, the FDA authorized the use of DIACOMIT® (stiripentol) for patients six months and older, weighing 15 lb or more, and taking clobazam. DIACOMIT was previously only available for patients two years and older. This news is exciting because it is the only treatment approved specifically for Dravet seizures in children as young as six months. 

More children will have access to specialized, effective treatment closer to the time of their Dravet syndrome diagnosis. Learn more and review DIACOMIT’s full prescribing information at their site.

 

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). Check out the available merchandise here.

A Book For You

Living In His Dreams is an illustrated children's book by Laura Jakubowski. It tells the story of her stepson Zach, who has Dravet syndrome. It’s a colorful, joyful book that teaches both empathy and acceptance of others. 50% of all book proceeds will be donated to DSF. You can purchase the book here.

New Webinar

Join DSF for a new 3-part webinar series detailing community feedback and encouraging discussion around adult transitions and long-term planning. The series kicks off on Wednesday, October 5, focusing on Post-Secondary Programming and Services for Adults with Dravet. Register 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:

  • DSF Casino Night - Our Casino Night fundraisers includes casino games, dinner, sponsorships, live and silent auctions, and more. It is a great excuse for adults to have a fun night out while supporting a cause they care about! Find an upcoming Casino Night in your area, or we'd love for you to host your own! Upcoming Casino Night event:

  • Dance for Dravet - Dance for Dravet is an annual fundraising event organized by the Brennan and Odlaug families to raise funds for the Dravet Syndrome Foundation. This year's event will take place on October 14, 2022, at Third Degree Glass Factory in St. Louis, Missouri.

 
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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