Every summer, families affected by FA come together at Camp Sunshine in Casco, Maine for five days. The Family Retreat (or Family Camp) is a special event that allows families to hear from expert FA researchers and physicians, to attend support groups for help in coping with the disease, to voluntarily participate in FA research projects, and to connect with other families affected by FA. Meanwhile, Camp Sunshine provides a fun-filled program for children with FA and their siblings.
Each year, kids, teens and adults with Fanconi anemia, as well as their siblings, meet each other for the first time or reconnect to make new memories. The incredible Camp Sunshine volunteers are there throughout the meeting to take care of the kids and form special bonds.
This year, members of the newly formed FAdult Council (FA Adult Council) came to camp to meet and speak with kids and teens with FA, as well as their parents. Members of the council held a panel for parents in which they shared their varied stories, spoke about struggles they have faced, and provided tips for parents to keep in mind as their children become adults. The council also held a session with preteens and teenagers with FA to answer questions and talk about what it’s like to grow up with FA.
Every year, we put on a fundraising celebration banquet during the Family Meeting to acknowledge and thank all who have raised funds for FARF. Without all of you who raise funds, programs like the Family Meeting would not be possible. Each year, it seems this banquet lasts a little longer, since so many families in attendance step up to raise funds throughout the year. Following dinner, parents let loose with some karaoke, which usually breaks out into a dance party.
Over three days, families have the chance to hear from current FA researchers and treating physicians. This year, doctors from the three main FA transplant centers shared updates on bone marrow transplant protocols and outcomes. Families also heard talks on cancer in FA, gene therapy, clinical trials (including metformin and quercetin), mental health and wellness, the science of the disease, as well as updates on FARF-funded research projects and initiatives like the FA registry.
Kids & teens have the chance to participate in a number of fun-filled activities, including mini-golf, a ropes course, arts & crafts, swimming in the pool or at the waterfront, a talent show, masquerade party, and plenty of games, indoors and out.
At this year’s Celebration Show, families surprised Ralf Dietrich with a thank you card and tribute video. Ralf, an FA parent and head of the German FA Research Fund & Support Group, has dedicated several years to the FA community. His project, Reducing the Burden of Squamous Cell Carcinoma in FA, has taken him all over the world to swab the mouths of hundreds of people with FA. Thanks to Ralf and his team, many suspicious lesions have been detected, leading to biopsies and subsequent detection of oral cancers. While the project continues on, Ralf himself will be stepping back from traveling so much.
Some of the most meaningful parts of the Family Meeting are the opportunities to remember loved ones and to simply reflect. During the week, families can participate in the balloon release to send a special message to loved ones, and the wish boat launch at the pond, where kids make a wish for their future and send off their boats together. At any time, families can spend a quiet moment in the Fanconi anemia garden or in one of the many peaceful spots around Camp Sunshine.
Special thanks to Kyle Tanner, Kristin Young, and Jenn Valentine for capturing so many great moments at the 2019 Family Meeting.