Camp Connections: Cystinosis
Camp Connections has expanded to include a Camp Connections: Cystinosis, allowing campers living with cystinosis, a rare kidney disease, to participate in an additional camp program exclusively for children and teens who share the diagnosis.
About Camp Connections: Cystinosis
Cystinosis is a rare genetic condition that happens when cystine (an amino acid) builds up in the body’s cells. Too much cystine can damage a body’s organs, and over time, cystinosis can lead to permanent kidney damage and kidney failure. In 2020, about 1 in 100,000-200,000 children had been diagnosed with cystinosis. Through Camp Connections: Cystinosis, these children are introduced to the relatively few others in the country who share their diagnosis.
Camp Connections: Cystinosis is a part of the American Kidney Fund’s Camp Connections, a free, virtual camp program that provides a unique space for children, families and hospitals from across the United States to form bonds that might not have been possible otherwise. Camp Connections provides a monthly dose of fun for children and teens living with a chronic illness. Most importantly, Camp Connections lets kids living with kidney disease be kids!
I see him more at ease in the virtual camps, more himself even though the kids might be complete strangers to him. They just "get it" – Tara, Parent
Camp Connections offers children with kidney disease a chance to connect with and relate to their peers.
Children living with kidney disease or kidney failure spend an average of 8-14 days a year in the hospital, often missing school, extracurricular activities and social lives to receive critical health care. This can lead to an increased sense of social isolation and loneliness, on top of navigating the challenges of a life-altering disease. Camp Connections offers a break from these challenges and allows them a chance to connect with others who truly understand.
In addition to Camp Connections activities, participants in Camp Connections: Cystinosis will have four additional virtual camp nights just for kids and teens living with cystinosis – giving them an opportunity to meet other kids just like them!
Each participant receives a welcome bag from AKF as well as the supplies for each monthly Camp Connections activity and the Camp Connections: Cystinosis activities. These include (but are not limited to) BINGO nights, art classes, STEM-related experiments and gingerbread house decorating.
It's wonderful for [our kids] to sit down together and spend time doing an activity and interacting with other kids all over the country who have a connection to kidney disease or cystinosis… It's evident how much effort AKF puts into these camp experiences and the kids enjoy it so much. WE are so grateful to be part of this program.
Register for Camp Connections: Cystinosis
Each month, AKF hosts a virtual activity over Zoom that gives kids with kidney disease the opportunity to form friendships with peers who have shared experiences. Throughout the year, kids will participate in a variety of virtual activities such as art classes, BINGO, science night, game night, trivia, and MORE!
Alternatively, you can download the camp registration form and send it to us at CampConnections@kidneyfund.org.
Enter your contact information:
Thank you to the generous support of Amgen for making this program possible.
We are also thankful to the Cystinosis Research Network for their leadership in supporting this patient community, and for their continued partnership with the American Kidney Fund.
