American Kidney Fund's National Virtual Camp for Children and Teens with Kidney Disease Expands Programming and Partners with New Hospitals

ROCKVILLE, Md. (Sept. 28, 2023) — In its second full year, the American Kidney Fund (AKF)'s National Virtual Camp program is increasing its reach and impact, growing from an idea developed to help reduce social isolation during the COVID-19 pandemic to a monthly dose of fun for an increasing number of pediatric kidney patients.

AKF's National Virtual Camp now includes programming for children with cystinosis, a rare kidney disease, and has added seven new partnered hospitals, bringing the total to 12 hospitals. The popular program provides an opportunity for children and teens from across the United States to share their experiences living with kidney disease and increase their confidence and self-esteem.

In this virtual format, the National Virtual Camp allows for more participants with 125 participants by the end of 2022 and 142 participants from more than 30 states so far in 2023. AKF continues to expand the program, partnering with more pediatric hospitals, but any child or teen living with kidney disease is welcome to enroll in the camp, even if they are not being treated by one of these partnered hospitals.

Children enrolled in AKF's National Virtual Camp receive a kickoff backpack with earbuds, a wireless charging station, coloring journal, water bottle and other items. Once a month throughout the year, they participate in a wide variety of virtual activities such as BINGO nights, art classes, STEM-related experiments and gingerbread house decorating. For the cystinosis-specific camp, which will host its first session in September, campers will participate in the regularly scheduled National Virtual Camp and will be invited to join two one-hour networking programs exclusively for children and teens with cystinosis. All sessions are organized and moderated by AKF staff.

"While many may think of kidney disease as something that only affects adults, that is simply not the case — this life-altering condition also affects children and teens," said LaVarne A. Burton, AKF President and CEO. "We are delighted to see this program continue to grow and to help facilitate opportunities for these children and teens to connect with others and form friendships with those who understand what it's like living with a chronic disease, all while creating fun, new experiences for them."

In 2020, 1 in 80,000 children in the United States was diagnosed with kidney failure, which can only be treated by dialysis or transplantation. Additionally, about 1 in 100,000-200,000 children has been diagnosed with cystinosis, 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.

Children with kidney failure who receive hemodialysis spend an average of 7.9 days in the hospital, while those receiving peritoneal dialysis spend an average of 13.3 days and those living with a kidney transplant spend an average of 7.7 days each year, according to the U.S. Renal Data System. Children who must spend these days receiving life-saving treatments can sometimes miss school, extracurricular activities and social life, leading to an increased sense of social isolation and loneliness. Research has also shown there is a higher prevalence of depression in children with kidney disease; the virtual camp strives to create a shared community for its participants.

The National Virtual Camp is made possible with support from Horizon Therapeutics, the Robert I. Schattner Foundation, Inc., the Truist Charitable Fund (a donor-advised fund at The Winston-Salem Foundation) and the American Legion Child Welfare Foundation.