January 11 , 2023

Dear Friends,

With the new year in full swing, we have a lot of exciting updates to tell you about, including new team members, clinical trial opportunities, and events. Our staff is the driving force behind executing our organization's mission and goals. As we grow by leaps and bounds, we are delighted to introduce you to the newest professionals of #teamDSF, who will help amplify our efforts in 2023 and beyond. Meet the team here.

Keep reading below to learn what's coming next at DSF, and how you can get involved. Our goal is to advance treatment and find a cure for those with Dravet syndrome. We look forward to having you join us as we continue our fight to make life better for our Dravet syndrome families.

Thank you,

Dravet Syndrome Foundation


2023 Clinical Trial Opportunities

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. Patients must participate to whatever extent they can, including 1) sharing their information so researchers can understand how Dravet syndrome affects individuals; and 2) volunteering for clinical studies or trials to help doctors understand how treatments affect patients.

In rare diseases such as Dravet syndrome, it can be difficult for potential treatments to reach the required number of participants to be granted FDA approval. In the absence of large numbers, we must leverage our resources, which include our strong patient community.

See which clinical trials are currently available and if someone you know qualifies by reading more here.


Thank YOU!

Near the end of 2022, we hosted our annual fundraising campaign, asking you to help us reach our year-end goal and increase donations for Dravet syndrome. We want to give a BIG thank you to everyone who participated. Together, we were able to raise over $315,000 through this campaign. Learn more or donate here if you missed it.

New Partnership

We are excited to share that Epilepsy Alliance America has become the managing organization for the Seizure Action Plan Coalition. As a founding organization of this coalition, we look forward to continuing our partnership with Epilepsy Alliance America and expanding this resource for our communities. Learn more.

Host an Event

A new year means new opportunities to host an event. Invite your friends and family to take their Steps Toward a Cure to help us raise awareness and funds for our vital research and patient advocacy programs. All children with Dravet syndrome can join for free with a registered adult. Learn more about how to host an event here.


News and Events

  • Get Your Dravet Swag - Show your support for the Dravet Syndrome Foundation with items from our online shop. We have everything from tumblers, stickers, t-shirts, and more. Shop now.
  • Educational Videos - DSF offers a variety of educational webinars and videos to help professionals and families navigate a Dravet syndrome diagnosis. See our educational videos here.
  • Unite Us - DSF has entered into a partnership with Unite Us, which connects families with vital services, such as peer support. The organization bridges the gap, ensuring families have what they need to move forward, including meeting needs such as food, clothing, and transportation assistance. Learn more.
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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