The Family Retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.

By Cecilia Córdoba, mother of Agustina Milagros Kaucic When my daughter Agustina was 2 and a half years old, our lives changed forever. It was very difficult to reach a diagnosis. And when we finally received it, it was devastating....

The children and adults with FA are why we’re all here. They are the reason for the countless hours spent in the lab, the energy poured into fundraisers, the conversations we have with anyone willing to listen, and the reason...