SPATA Foundation

The SPATA Foundation is a 501(c)(3) nonprofit organization dedicated to supporting people and families affected by SPATA5 and SPATA5L1-related genetic disorders. These rare conditions can involve developmental delays, hearing loss, seizures, and movement disorders, though each child’s experience is different. The foundation works to improve lives through advocacy, education, family connection, and research, bringing together families, clinicians, and researchers to advance understanding and pursue better care and treatments.

For families navigating a diagnosis, the foundation offers newly diagnosed guidance, educational resources, a library, family stories, and a global family network. Its website also shares news, published research, active research projects, and information about patient registries, drug repurposing, and gene therapy research. Families can explore opportunities to participate in research and connect with others through the family network.

Supporters can contribute through donations, fundraising, awareness initiatives, events, and the foundation’s shop. By mobilizing community support and funding research, the organization aims to accelerate progress toward viable treatment options and a brighter future for people affected by SPATA5 and SPATA5L1 disorders.