When Dravet Syndrome Foundation (DSF) began in 2009, it started with four parents and a bold vision: advance understanding of a little-known disease, create treatments where there were none, and fight for a cure for their children.
Their drive didn’t come from institutional power or major medical backing—it came from desperation, hope, and an unwavering love for their kids.
That same relentless spirit still drives everything we do at DSF.
Just ask Gloria Rodriguez, our Health Equity Coordinator and mom to Grace, age 13.
I decided that Grace should be part of clinical research because I was terrified. Because she had failed so many medications already, and there is no way that she would be able to live much longer in the state that she was in. And I was desperate. And I wanted to do anything that I could to help her.”
Gloria said yes to a clinical trial out of love for her daughter. What she didn’t expect was that this “yes” would go on to help get a medication approved by the FDA—a treatment that has saved lives and continues to bring hope to newly diagnosed families across the world.
That’s what community-powered research can do.
You can hear Gloria share her story in her own words in the short video featured on our Annual Campaign page.
A Critical Moment for Research
This year, we’ve received a record-breaking 43 research grant applications for our 2025 funding cycle—nearly double our previous high. That’s 43 potential breakthroughs. 43 opportunities for answers. 43 reasons to act.
Among the projects that need funding is the DSF-funded Behavioral Biomarker Pilot Study, which uses artificial intelligence to identify subtle movement patterns—or “behavioral signatures”—in children with Dravet syndrome. These signatures could help predict treatment success faster than ever before, reducing the painful cycle of trial and error for families and doctors alike.
Parents are already stepping up—filming simple home videos to help “teach” the AI models. Every video, every participant, every donor is pushing science forward.
But we can’t move forward without your help.
This research—and the 43 proposals we’re currently reviewing—depend on community support to become reality.
Learn more about this research study on our Annual Campaign page.
Our Slogan Says It All
Community. Research. Progress.
- We need families to participate in research when they can.
- We need supporters to donate when they can.
- We need allies to fundraise when they can.
Because that’s how real progress happens.
And the truth is: this research is powered by people like you. People who show up, who give when they can, who say yes—just like Gloria did.
You Made This Happen in 2025
Thanks to your generosity, DSF was able to:
- Fund $1.8 million in new research grants, with the anticipation of funding at least another $1 million dollars in grants before the end of 2025
- Host our 16th Annual Research Roundtable
- Launch a new Health Equity Committee
- Provide vital resources on our website
- Kick off a Legislative Advocacy Initiative
- Hold 5 Regional Day of Dravet Events
- Raise over $2.1 million across 6 gala events
- Recruit more families into the Dravet Genome Study
These wins are yours.
But we can’t slow down now—not when the need is so urgent. Not when families are still waiting.
The Bottom Line: It Takes a Village
We often say that it takes a village to make progress. But the power of this village—the Dravet community—is unmatched.
- If we continue to lead with the same relentless spirit we saw in those four founding parents…
- The same spirit we see in Gloria and in Grace…
- The same strength we see in every Dravet family…
Then we will continue moving toward better treatments—and someday, a cure.
But we need our village to act. Now.
- Fundraise now.
- Participate now.
- Donate now.
