Full Press Release Details
When Kristen DeAndrade was originally imagining what a camp for people living with skeletal conditions and their families might look like, as someone who had little experience with camps, she wasn’t sure how it would all come together. But the Founder and Executive Director of the Little Legs Big Heart Foundation had a clear vision for the objectives of bringing the community together in such a setting.
“I wanted it to be a home away from home – a place where people could make those connections that truly matter, have the hard conversations, where kids could form bonds with other kids, teens, their camp counselors,” Kristen says of what would become Camp Ellellbee. “And honestly, it has exceeded my expectations.”
Held for the first time throughout this fall, Camp Ellellbee has brought together more than 60 families from the U.S. dwarfism community for weekends filled with traditional camp activities, laughter and connections meant to broaden support networks and encourage open dialogue about living with genetic skeletal conditions. The free, adaptive camp held at six locations across the United States seeks to involve all members of the household to help create an inclusive community that is centered around skeletal conditions, but includes a broad diversity of lived experiences.
Kristen DeAndrade, Founder and Executive Director of the Little Legs Big Heart Foundation, established Camp Ellellbee to help create important connections for people living with skeletal conditions and their families.
Just like the attendee list, Camp Ellellbee staff includes people from various walks of life. Kacie, a longtime camp counselor who is living with a genetic skeletal condition, was thrilled to find an opportunity to do what she loves with a familiar community. Likewise, camp attendees noted how meaningful it was for their kids to have someone like Kacie to look up to.
“Anyone with a difference feels on the outside, and there’s something about finding people like you who understand what you’ve been through and what it’s like,” Kacie says. “The magical thing about Camp Ellellbee is people are creating connections and making friends while it’s disguised as fun.”
Raegan, an 11-year-old girl living with achondroplasia, attended Camp Ellellbee in Cedarpines, California, with her family. Raegan’s mother, Raechel, says she welcomed the opportunity to include the whole family, including her son who is not living with achondroplasia, as well as the chance to speak with other parents and caregivers about the totality of their children’s journeys.
“We need to be able to talk about those things openly and acknowledge there is an entire component of medical care that is required for our kids to have their health as long as possible, and to also take care of our parents and our caregivers who are battling those things and advocating every day for their kids,” Raechel says. “Being at camp has reminded me that there are a lot of people out there that really want to move the needle forward.”
Raegan (left) and her mother Raechel were among the more than 60 families to attend Camp Ellellbee this past fall.
Camp Ellellbee has also inspired Kristen to continue building an inclusive community that can help drive progress for people living with genetic skeletal conditions.
“Camp Ellellbee is a catalyst for change. We’re bringing things into the light that have gone ignored and needs that have gone unmet for a long time,” Kristen says. “I don’t think there’s anywhere else I’d rather be.”
• Topics:
• Achondroplasia
• Community
• Patients
• Rare Disease
• Skeletal Conditions