For five days this June, families affected by Fanconi anemia gathered at The Painted Turtle in Lake Hughes, California for something both simple and meaningful: time with people who get it.
Held June 20-24, the 2026 Fanconi Cancer Foundation Family Retreat welcomed 50 members of the FA community from the United States, Vietnam and the United Kingdom, including five families who attended for the first time.
The 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.
Friendships New and Old
Throughout the weekend, new friendships formed naturally. One especially touching moment came when 8-year-old Ori connected with 8-year-old Logan. Logan walked up to Ori, gave him a hug and told him how glad he was that they had become friends.
For the many preteens and teenagers at this year’s retreat, camp offered a rare opportunity to spend time with peers who share some of their experiences without FA having to be the center of every conversation. They fished, played, laughed and got to be themselves.
One family described what that meant for their 14-year-old son, Blake:
“It was wonderful reconnecting with old friends and meeting new families who truly understand this journey. One of the highlights was watching Blake find a group of teenage boys his age who love to fish, play baseball, and just be normal teenagers together. Those connections are priceless.”
Old friends also picked up where they left off. Several families even made plans to extend their time together and explore Los Angeles after camp.
In the retreat evaluation, families repeatedly identified connection as one of the experience’s greatest benefits. One returning parent shared that both their child with FA and their child without FA formed close friendships.
“The ability to connect with other families is truly amazing, and in a rare disease that can feel isolating, that sense of community is truly invaluable.”
Confidence, Joy and New Experiences
Sometimes, the impact of camp appears in small but important moments.
Staff watched 17-year-old Eli become more engaged in activities and with the people around him as the weekend unfolded. He came out of his shell and even initiated hugs with his parents, something they said he doesn’t usually do. His experience showed how a special environment can help children build trust, try something new and grow in confidence.
There was plenty of joy, too. During the talent show, 11-year-old Nhi captivated the room with her piano playing. The show is always a highlight because it gives children and adults the chance to share what they love while their community cheers them on.
Learning From Professionals and One Another
Alongside camp activities, families attended educational sessions about nutrition, insurance, research, treatment and other aspects of life with FA. Participants valued the opportunity to hear from professionals, ask questions and take home information they could use.
A first-time attendee from Vietnam described the program as scientifically valuable while still being understandable for families. For her, the combination of medical education and community made the long trip worthwhile.
The retreat also created space for honest conversation. In caregiver support groups, family members exchanged coping strategies and learned from one another’s experiences. One parent called the sessions “a warm, supportive environment” where families could openly share their experiences, challenges and hopes. Another said the conversations strengthened their confidence in caring for their child.
These discussions can reduce isolation and give families ideas they can use when they return home. They also build a network people can turn to during difficult moments, important decisions and everyday life.
What Support Makes Possible
The Family Retreat is one way FCF supports families beyond the research we fund. It creates opportunities for belonging, education, confidence and respite for people living with a rare and complex condition.
This year’s retreat was made possible through the generosity of the Rice family and many other donors and partners who believe in the importance of bringing the FA community together. Their support helps families travel to camp, participate in meaningful programming and spend four days surrounded by people who understand.
The impact could be seen throughout the retreat: a first-time family finding their place, a teenager meeting friends who share his interests, a child stepping forward with new confidence and families traveling across countries to be together.
We are grateful to every family, staff member, volunteer, donor and partner who helped make the retreat possible, and to The Painted Turtle for providing a place where the FA community could connect, grow and belong.
