DSF Annual Campaign - Dravet Syndrome Foundation

We’re facing an unprecedented opportunity: 43 new research proposals. With your support, we can fund more hope than ever in 2026!

Dear Friend,

When your child lives with Dravet syndrome, every day feels uncertain. Gloria, one of our staff members and a fellow Dravet mom, remembers the desperation she felt when she enrolled her daughter, Grace, in a clinical trial. She would have done anything to help her child.

At the time, she didn’t realize the bigger impact her “yes” would have. That trial helped get a new therapy approved by the FDA—a treatment that has since saved the lives of other children in our community.

The problem is clear:
Families like Gloria’s wait months—or even years—to know if a treatment is working. Children suffer through seizures, side effects, and setbacks while doctors have no reliable way to predict medication success.

The solution is in reach:
With your help, DSF is funding a Behavioral Biomarker Pilot Study that uses artificial intelligence to detect subtle movement patterns invisible to the human eye. These “behavioral signatures” could tell doctors quickly whether a therapy is helping—shortening the painful trial-and-error cycle.

And thanks to your support, families are already participating in a related clinical study at the University of Michigan. Parents are sharing simple home videos of their children to “teach” AI programs how to recognize treatment responses. Each video is moving science closer to breakthroughs.

But this progress depends on you.
Your gift today fuels research in the lab and makes clinical studies possible. Together, donors and families are the engine that drives change.

By December 31, we must raise the funds to keep this research moving forward. Families can’t wait—and neither can we.

Please make your year-end gift today.

Mary Anne Meskis
Chief Executive Officer
Dravet Syndrome Foundation

P.S. Why not use this opportunity to make a donation in honor or in memory of a loved one? Be sure to include that information on the donation form. And don’t forget to send your gift by the end of the year to maximize your tax savings. Thank you for supporting DSF!

Hear from our community on how your gift is making a difference.

We developed a transgenic rabbit model of Dravet syndrome because rabbits more closely replicate human heart and respiratory physiology than mice and, unlike our previous iPSC work, provide a complete organism to translate to the clinical setting. Our experimental strategy will allow us to record SUDEP in real time in freely moving animals that mimic human disease so that we can more completely understand the details of SUDEP mechanisms. We are deeply grateful to the Dravet Syndrome Foundation for funding this important, high-risk but high-reward work. We hope that our results will provide critical new insights on the combined contributions of seizures and cardiac arrhythmias to the mechanism of SUDEP.

We are forever grateful for The Dravet Syndrome Foundation for providing an outlet to connect with other families, resources and above all continuing to advocate and raise funds to find a cure. Sienna is a warrior and a fighter. She doesn’t deserve the cards that have been dealt to her, but she handles it with tenacity and grace. Through it all, she gives us strength and hope when it feels like our tanks are empty. With the continued support, fundraising and advocacy we are hopeful we will see a cure in her lifetime

The Dravet Syndrome Foundation helped save us. Two new parents to a then 5 month (now 3) old seizing uncontrollably, in and out of the hospital, a million questions, lost and scared, until we received the Dravet Syndrome Diagnosis and found this community. This foundation, these people, give us hope, community, a shoulder to cry on. They are a safe place. We could not be any more thankful.

Our family was so incredibly grateful to receive a scholarship to help us financially be able to attend the Dravet Syndrome Foundation conference in Minneapolis. Since the earliest days of diagnosis, I ached to meet other families experiencing the things that we were going through. Being in a room filled with so many others who truly understand the challenges and triumphs of Dravet Syndrome brought my family an indescribable sense of peace and healing. The sibling camp was an incredible experience for my oldest daughter who was finally able to connect with other kids who understand. We cannot thank DSF enough for this opportunity.

My daughter is 8 years old and lives with Dravet syndrome. The Dravet Syndrome Foundation (DSF) has made navigating this journey so much easier for our family. The support, resources, guidance, and sense of community they provide are truly invaluable. Through DSF, I’ve connected with others who understand what life with Dravet looks like, and their perspectives and advice have been a lifeline. DSF is an incredible advocate for individuals with Dravet and their families, constantly working to make a difference and improve lives. Personally, we have been blessed by their patient assistance grant program. My daughter received a wagon, a cooling vest, and an Epimonitor. These are items that insurance does not cover and that make a huge impact in her care and safety. There is so much I wouldn’t know without DSF and the community they’ve built. I am deeply grateful for all they do and cannot imagine walking this path without them.