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.
Events
FA Connect | Navigating Living Losses: Understanding, Acknowledging, and Managing Change
Join Lori Krause for a workshop designed to explore and process “living losses”—non-death-related losses that arise from life transitions, changes, or unmet expectations. Examples of living losses include the loss of identity, health, relationships, careers, or abilities. Participants will gain tools to acknowledge these losses, better understand their emotional impact, and develop strategies to navigate the associated changes.
5:00- 6:30 pm Pacific Time
Spanish interpretation services are available upon request when registering for the session. Please note that while we will do our best to provide interpretation, we cannot guarantee their availability.
FA Connect | Navigating Living Losses: Understanding, Acknowledging, and Managing Change
The Latest
News & Events
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.
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.