Events
Find the latest news about events FMRF is hosting or supporting to advance research of FOXP1 syndrome.
Foxy Fest
October 24th 2026, at Haystack Farms
A few months before his second birthday, the Hesters’ youngest son, Lev, was diagnosed with FOXP1 syndrome. It's been a journey. Lev is now 3, making wonderful progress and working hard in his behavioral therapies, and they could not be prouder of him. Still, a rare disease like FOXP1 brings real challenges and real uncertainty about what his future will look like.
Earlier this year, the Hesters found the FOXP1 Medical Research Foundation and were encouraged by the serious, rigorous work the foundation is doing, from launching studies to advancing drug development. They understood the real potential for treatment and decided to do everything they can to support them and all FOXP1 kids hoping for a brighter future.
Foxy Fest will raise money for FOXP1 treatment development. No gala, no auction, just a big party to celebrate life and raise money for groundbreaking medical research. Lite bites, booze, and water provided. We'll have a few DJ sets and a big group of fabulous dancers to party with.
To learn more about the event or donate please visit the event site.
Past Events
Take A Step For FOXP1
August 22nd 2026 at EDS Studio
Two and a half years ago, Alia Chen was diagnosed with FOXP1 syndrome, an ultra-rare genetic disorder that affects speech and language development, learning, motor skills, and behavior.
At the time, her family was told that there was nothing they could do for Alia, and that life would always be harder. But Alia doesn't let her diagnosis define her. She's a student at Expression Dance Studio, and anyone who has watched her dance knows the joy and determination she brings to every step, even when her body doesn't always cooperate with what she's asking it to do.
Because so little is known about FOXP1 syndrome, research is essential to developing better treatments. Alia’s family hosted a dance-a-thon, raising ~$30k for FOXP1 research.
FOXP1 Medical Research Conference
July 14-15, 2026, at UCLA
The FOXP1 Medical Research Foundation hosted the FOXP1 Medical Research Conference 2026 at UCLA, bringing together leading scientists and clinicians studying FOXP1 syndrome and related neurodevelopmental conditions. Researchers from around the world presented the latest discoveries about FOXP1 biology, disease mechanisms, and potential therapeutic approaches.
This conference was designed to accelerate progress toward treatments for FOXP1 syndrome while also helping researchers better understand the needs and experiences of FOXP1 families. While the conference is primarily intended for scientists, clinicians, and industry, parents who have a particular interest in the scientific aspects of FOXP1 research attended.
For full details, including the agenda and speakers, please visit the conference page.
FOUND study webinar
March 12, 2026, 8pm-9pm ET on Zoom
Together with the International FOXP1 Foundation (IFF), we hosted a webinar with Dr. Rujuta Wilson, who leads the FOXP1 Natural History Study at UCLA known as FOUND (FOXP1 syndrome: Understanding Through Neurodevelopmental Deep Phenotyping to Support Clinical Trials).