When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that's when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.
Events
Annual Family Retreat
We are delighted to invite you to the upcoming FA Family Retreat, taking place at The Painted Turtle from June 21-25, 2025.
The Family Retreat offers a unique opportunity for families registered with us to participate in presentations by leading researchers and physicians specializing in Fanconi anemia (FA). Attendees will benefit from support groups aiding in coping with the disease, voluntary participation in FA research projects, and the chance to connect with other families impacted by FA.
Event Details:
- Dates:
June 21 – 25, 2025 - Check-in:
Saturday, June 21 - Check-out:
Wednesday, June 25
Registration is open now on the Painted Turtle website. All family applications must be completed by May 1.
Event: Meetings
Annual Family Retreat
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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....