FOXP1 Syndrome was first diagnosed in 2009. The disorder is defined by a deletion of or mutation on the FOXP1 gene and frequently presents with characteristics of low muscle tone, impaired verbal skills, and global developmental delays. While initially difficult to test for and diagnose, the development of more readily available genetic testing has allowed for the diagnosis of several hundred individuals worldwide. Despite these growing numbers, FOXP1 Syndrome is still considered a rare disease, and we are only just beginning to understand its genetic basis and the spectrum of clinical presentation.
With the desire to fill the gap in scientific information, a group of families first met online in a group called The RareConnect FOXP1 Community. Facebook groups were subsequently created to allow families to meet, compare experiences, and discuss strategies to improve the lives of their children with FOXP1 Syndrome.
The personal connections made through social media have brought together the FOXP1 community from all over the world. In 2018, a group of parents in France gathered for a weekend to get acquainted and share information about their experiences with the disorder. A year later, in June 2019, twenty families from the United States, Canada, the Netherlands, Norway, Switzerland, and France gathered at The Seaver Autism Center for Research and Treatment, Ichan School of Medicine at Mount Sinai Hospital New York City. Leading researchers on FOXP1 Syndrome and autism presented information on the disorders as well as information on areas of research that they continue to pursue. The conference also provided an opportunity for families of individuals with FOXP1 Syndrome to meet, share information on their child’s development, and enjoy the benefits of connecting in person with others in the FOXP1 community.
Building on the momentum of the conference, parent volunteers organized to kick off the development of The International FOXP1 Foundation (IFF). In the fall of 2020, the foundation was officially established. We applied for 501(c)(3) non-profit status in the United States and the Board of Directors was formed. The IFF and Board of Directors will continue to work on behalf of all FOXP1 families with doctors, scientists, and medical organizations to advance the knowledge and resources for families and individuals with FOXP1 Syndrome.
Our mission is to build a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, encouraging research, and raising awareness.
Our vision is that, with family support and medical research, every individual with FOXP1 syndrome will have the opportunity to reach their full potential and lead a productive and rewarding life.
The International FOXP1 Foundation values are:
Keep the well-being of our children as the focus of our work
Respect the diversity of all members
Keep confidential all information provided within the group
Support each family’s unique decisions and autonomy
Be transparent and open within our operations