More than four decades ago, Lynn Frohnmayer was a mother searching for answers after learning that three of her five children had Fanconi anemia. There was no roadmap and no established network of families or experts. Information was scarce, treatments were limited, and the future her family had been given was devastating.
Announcements, Stories
What I hope for most is greater awareness, earlier diagnosis, access to treatment and support for families affected by FA in Malaysia. I hope no other mother has to go through what I went through, feeling confused, unprepared and alone while watching her children struggle with FA.
Stories
The Fanconi Cancer Foundation is pleased to recognize Dominika as the first-place recipient of the 2026 Winn/Byrd Award for Adults with FA. Dexter Sherrell received the second-place award for his work connecting people affected by rare diseases with researchers, health care professionals and advocates.
Stories
Our son Blake is 14 years old and eight years post bone marrow transplant. While we celebrate milestones, it’s important to remember that the transplant did not cure his Fanconi anemia. It gave him something incredibly valuable, more time, but FA is still part of his life.
Stories
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.
Stories, Uncategorized
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.
Stories
