About the Foundation
Our Story
The International FOXP1 Foundation was built by families, for families. This is how it began.
Our Story
Understanding a Rare Diagnosis
FOXP1 syndrome is a rare genetic disorder first identified in 2009. It affects individuals in a variety of ways and remains poorly understood outside of a small but growing research community.
- Delays in early motor and language milestones.
- Mild-to-severe intellectual differences.
- Speech and language impairment.
- Behavioral and sensory differences.
- Over 1,000 cases identified worldwide, with many more believed to be undiagnosed.
The genetic basis and clinical spectrum of FOXP1 syndrome are still being explored. Families are on the leading edge to contribute to a better understanding of FOXP1 syndrome.
2019 — Families gather at The Seaver Autism Center at Mount Sinai Hospital, New York City.
A Community Forms
Families Finding Each Other
With little scientific information available, families turned to each other. What began as a handful of online conversations grew into an international network.
- The RareConnect FOXP1 Community brought the first families together online.
- Facebook groups made it easier to compare experiences across countries.
- Parents shared strategies to support their children's development, therapy, and daily life.
The 2023 Family Conference, Long Island New York.
2019 First family gathering, Seaver Autism Center, Mt Sinai Hospital, Manhattan NY
From Meetup to Foundation
A Foundation Is Born
Small family meetups became a turning point. In 2018 parents in France gathered to share experiences. A year later, twenty families from around the world met with leading researchers in New York City — and the vision for a Foundation took shape.
- 2018 — French families hold the first in-person gathering.
- June 2019 — International conference at The Seaver Autism Center at Mount Sinai Hospital.
- Fall 2020 — The International FOXP1 Foundation is officially established.
- June 2025 — Brandi Underwood joins the foundation as Executive Director, its first paid staffperson
- Today — A Board of Directors works with clinicians, researchers, and partner organizations worldwide.
The growth of the Foundation is due to the dedication of many parent volunteers. They share a commitment to develop an international global community, that supports families and researchers worldwide.
Mission & Vision
Our Mission & Vision
Our Mission
To build a global community that advocates for individuals and families affected by FOXP1 syndrome by supporting and empowering our community, advancing research, and increasing awareness.
Our Vision
Every individual with FOXP1 syndrome will have the opportunity to reach their full potential and lead a productive and rewarding life.
What We Do
How the Foundation works
today
Guided by our 2024–2027 Strategic Plan, our work is organized around four pillars that reflect what our community told us matters most. Read our 2025 Annual Report to see the progress we made this year.
Research
Funding studies, engaging researchers, and building the data needed to accelerate progress on FOXP1 syndrome.
Support
Guiding families from diagnosis onward through ambassadors, resources, and connections in their own language.
Community
Bringing families together in person and online through conferences, meetups, and peer networks.
Awareness
Raising the profile of FOXP1 syndrome with clinicians, partners, and the wider rare disease community.