Press Release
Executive Director Named for International FOXP1 Foundation
Brandi Underwood Named Executive Director of the International FOXP1 Foundation
Mendenhall, PA — May 21, 2025 — The International FOXP1 Foundation (IFF) is proud to announce the appointment of Brandi Underwood as its first Executive Director. FOXP1 syndrome is a rare genetic disorder characterized by delays in early motor and language milestones, mild-to-severe intellectual deficits, speech and language impairment and behavior abnormalities. As the condition is still being studied, researchers are learning more about its impact on neurodevelopment.
As Executive Director, Brandi is responsible for leading the organization through its next phase of development and fulfilling the strategic vision of the International FOXP1 Foundation’s Board of Directors.
“We are incredibly excited to be bringing Brandi into the organization as our first Executive Director. We look forward to working closely with Brandi to help us increase our programming, outreach, and financial sustainability to best meet the FOXP1 community's needs,” Foundation co-Presidents Cheryl Richt and Karl Whitney said.
FOXP1 mutations are rare, but more and more cases are being identified as genetic testing becomes more widespread. Each year dozens of new cases are identified around the globe. There are likely many more people carrying mutations in the gene who have not yet been diagnosed.
“Joining the International FOXP1 Foundation as its first Executive Director is an incredible honor. I am excited to expand the Foundation’s success built by families who worked together to create the community they needed. I am here to carry that momentum forward by growing our impact and securing the resources needed to support families, drive awareness, and extend our global reach,” said Brandi.
Brandi brings almost 15 years of diverse experience with half of that in the nonprofit sector developing an expertise in leading programs, securing resources, and building meaningful partnerships. Her last four and a half years have been dedicated to the rare disease space, equipping her with the insight and experience to lead the International FOXP1 Foundation forward to expand its reach and impact.
About the International FOXP1 Foundation
The International FOXP1 Foundation’s mission is to build a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, supporting research, and raising awareness.
In 2018, a group of parents in France gathered to share their experiences. The following year, in June 2019, twenty families from several countries attended a conference at The Seaver Autism Center at Mount Sinai Hospital in New York City. Building on the conference's success, parent volunteers launched The International FOXP1 Foundation (IFF), which was officially established in the fall of 2020. The foundation, with its Board of Directors, is dedicated to working with medical professionals and organizations to advance knowledge and resources for those affected by FOXP1 syndrome.
Press Release
FOR IMMEDIATE RELEASE
The International FOXP1 Foundation Announces Funding for Three Groundbreaking Research Projects
Wilmington, 18 March 2025 - The International FOXP1 Foundation is proud to announce the funding of three innovative research projects aimed at advancing the understanding and treatment of FOXP1 syndrome. These projects, totaling nearly $300,000 in research funding, represent a significant step forward in uncovering the mechanisms underlying FOXP1 syndrome and developing potential therapeutic strategies.
FOXP1 syndrome is a rare neurodevelopmental disorder characterized by intellectual disability, speech and language impairments, motor challenges, and autism spectrum features. Through these funded studies, leading researchers from institutions across the globe will explore key aspects of FOXP1 syndrome, from genetic restoration strategies to neural network modeling and clinical trial readiness.
Project 1: Investigating FOXP1 Dosage Restoration in a New Mouse Model
Principal Investigators: Dr. Yann Herault (Institut de Génétique et de Biologie Moléculaire et Cellulaire), Dr. Guillaume Pavlovic (Institut Clinique de la Souris), Dr. Marie-Christine Birling (Institut Clinique de la Souris)
This study aims to determine whether restoring normal FOXP1 protein levels in a newly developed mouse model can correct key symptoms of FOXP1 syndrome. By selectively reactivating FOXP1 at different developmental stages, researchers will assess the impact on activity levels, vocalization, and lean mass. The findings could provide a foundation for future therapeutic interventions and will establish a valuable mouse model for the broader scientific community.
Project 2: Modeling FOXP1 Syndrome Using Human Brain Organoids
Principal Investigator: Dr. Bennett Novitch (University of California, Los Angeles)
Using patient-derived stem cells, this project will generate three-dimensional brain organoids and assembloids to replicate the neural network disruptions caused by FOXP1 mutations. By studying brainwave activity and cellular communication, researchers will gain insights into how FOXP1 syndrome affects brain development. This model has the potential to accelerate drug discovery by providing a human-based platform for preclinical therapeutic testing.
Project 3: Advancing Clinical Trial Readiness Through Objective Neurodevelopmental Phenotyping
Principal Investigators: Dr. Rujuta Wilson (University of California, Los Angeles), Dr. Catherine Lord (University of California, Los Angeles
To address gaps in the understanding of FOXP1 syndrome’s neurodevelopmental profile, this study will implement scalable and objective assessments of motor function, language, cognition, and autism symptoms in children ages 1-15. The study design includes both in-person and remote testing, allowing for broad participation. By identifying key developmental patterns and refining assessment tools, this project will lay critical groundwork for future clinical trials aimed at evaluating potential treatments for FOXP1 syndrome.
A Commitment to Scientific Progress
The International FOXP1 Foundation remains dedicated to supporting cutting-edge research that improves the lives of individuals with FOXP1 syndrome and their families. These projects reflect our commitment to accelerating scientific discovery and moving closer to meaningful therapies.
For more information about the foundation and our research initiatives, please visit www.foxp1.org.
Karl Whitney and Cheryl Richt
Co-Presidents International FOXP1 Foundation
About the International FOXP1 Foundation
The International FOXP1 Foundation is a nonprofit organization dedicated to supporting individuals and families affected by FOXP1 syndrome through advocacy, education, and research funding. Our mission is to drive scientific advancements that lead to improved understanding, treatment, and quality of life for those living with FOXP1 syndrome.