April 13, 2022

Dear Friends,

One lesson we learned from the pandemic is how much getting together with the community matters. Don't get us wrong — We love interacting with you online. But every two years, the Dravet syndrome community gathers together because nothing can replace the friendships, information sharing, or connections that take place when we're in the same room. This is why we planned a 3-day DSF Family & Professional Conference this June in Fort Worth, Texas: To make sure that magic happens.

The only thing missing is your registration. (Unless, of course, you've already registered. In that case, turn to your friends in the Dravet syndrome community and ask, "What are you waiting for?") If you need help getting to this biennial conference, apply for our family scholarship TODAY to make sure you can take part in this event.

We don't want you to miss out because we don't want to miss you. So come together with your community and walk away with new relationships, ideas, and support. We can't wait to greet you in Texas.


Dravet Syndrome Foundation


What Are YOU Waiting For?

apply for the conference scholarship

We told your Dravet syndrome community friends in our opening letter to ask you this question: What are you waiting for? But we're asking you, too. Our DSF Conference Scholarship Program offers financial support to individuals and/or families to attend the 2022 Biennial DSF Family & Professional Conference in Fort Worth, Texas. We want to make sure as many families as possible can attend this special event. There are a limited number of scholarships available, so we encourage you to apply TODAY so you don't miss out on this opportunity. 

ARGUS Clinical Trial for EPX-100

Join This New Epygenix Trial 

ARGUS clinical trial for EPX-100 (Clemizole HCL) is enrolling patients and rapidly adding new sites in the US, Canada, Spain, UK, and Australia. Learn more.

Ciara's Spirit of Hope Nominations

Ciara's Spirit of Hope Award

Submit a nomination TODAY to acknowledge those who go above and beyond for the Dravet community through their work with DSF. Learn more.

DSF Birthday Buddies

DSF Birthday Buddies Club

Receive a birthday card and a small gift from DSF’s mascot, Aurora, during your birthday week. Open to Dravet syndrome patients in the US. Learn more


News and Events

  • DSF Conference: Join us for DSF’s 5th Biennial Conference on June 23-25, 2022, in collaboration with Cook Children’s Medical Center in Fort Worth, Texas. This 3-day event unites all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and pharmaceutical professionals.

  • Double Down Peoria: A night of appetizers, drinks, casino games, and silent and live auctions on June 4, 2022 at the Holiday Inn & Suites in Peoria, Illinois. 

  • 5K for Dravet: A fun event on April 30, 2022 at the Golden Gate Park (14th Ave Picnic Area) in San Francisco, California. This event includes family-friendly activities and light refreshments! Registration begins at 8:30 AM with the 5K fun run starting at 9:00 AM.

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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