Every summer, families affected by FA from come together at Camp Sunshine in Casco, Maine for five days. The Family Meeting (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.
We asked FA families to share with us some of their favorite moments from 2018’s meeting. As memories were shared, we noticed some common themes that families seemed to appreciate most about camp. Here are ten of the best things about FA family camp:
Finding your people
“One of my favorite moments was swaying side to side with our arms around each other singing the Camp Sunshine theme song. It was very special to know that at that moment, everybody had each other’s backs no matter what. We understood each other more in a glance than some people do in a lifetime. It was a peaceful easy feeling!” – Jack, adult with FA
Feeling it all in support groups
“The support groups are our favorite part of Camp. It’s such a special time, when we can share the best and worst moments of living with FA, with the only other people in the world who really get it.” – FA parent
Giving everyone in the family a place to belong
“One of the best things about camp is knowing my 13-year-old, who does not have FA, actually wants to be there. She makes friendships and memories that carry her the whole year through. It makes my heart smile. Most days are spent dealing and worrying about our daughter with FA, so we love knowing that our children without FA are happy at camp. That is the best feeling in the world!”
– Dawn, FA parent
Reuniting with friends and FAmily
“My favorite moment is always the big reunion between our son Dylan and his closest friend, Eli.” – Lisa, FA parent
Hearing from the best FA experts in the world
“We’re always grateful for the updates from FA researchers and doctors. The panel on bone marrow transplant is so informative, and we love learning about trials and therapies on the horizon. It’s great to see how our fundraising efforts are literally paying off.” – FA parent
Kicking back and having fun
“We love hanging out and swimming at the beach area as a family on Tuesday afternoon (the free day)!” – The Hessels Family
Releasing balloons and remembering
“The emotional power of the balloon release caught me unawares and certainly made me pause to reflect on what more I could do to help reduce the number of balloons in the future. A very poignant moment.” – Bob, FA parent
Bonding between FA parents
“I love the bonding between FA moms, working out the stress of having a kid with FA.” – FA parent
Bonding between FA parents
“I love the bonding between FA moms, working out the stress of having a kid with FA.” – FA parent
Welcoming the joy
“Our favorite moments are watching the joy on our son Eli’s face. Every day he makes a new friend. Those memories will forever stay will our family.” – Madison, FA parent
Thank you to everyone who makes the Family Meeting possible each year. If you’re interested in attending this year’s meeting, please get in touch with our team or click below. See you in June!
