At first, it looks like a routine day in the industrial kitchens of the Free Library of Philadelphia’s Culinary Literacy Center as teenagers and adult staffers scurry around, clattering together the tools of a cooking class. But a closer look at the “CHOP It Up Summer Cooking Camp” recipe booklets being distributed tells a different and unusual story. These teens — all chronic kidney disease (CKD) or kidney transplant patients — are part of an innovative Children’s Hospital of Philadelphia (CHOP) program teaching them how to manage their restrictive diets by becoming their own chefs.

A project headed by LDI Senior Fellow Sandra Amaral, MD, MHS, Medical Director of CHOP’s Pediatric Kidney Transplant Program and President of the American Society of Pediatric Nephrology, the program is the subject of a perspective article in the Clinical Journal of the American Society of Nephrology (CJASN).

The low-profile, weeklong cooking camp, now in its 10th year, is designed to help children with CKD learn to prepare healthy, kidney-friendly meals while building confidence, independence, and friendships.

Expanding Palates and Resilience

Children with CKD often spend much of their lives dealing with restrictive diets, medications, dialysis, and medical appointments. Many become frustrated with the foods they are expected to eat and feel they have little control over their daily lives. In her perspective, Amaral argues that teaching children to cook healthy, appealing meals can transform dietary management from something imposed on them into a skill they own. “Empowering youth to engage in healthy, flavorful cooking presents an avenue to expand not only their palate but also their resilience in managing CKD,” she said.

Guided by a professional chef, participants learn practical cooking skills, nutrition, and ways to manage the challenges of living with kidney disease through hands-on activities, teamwork, and social support. They cook meals together and learn how to control salt, potassium, phosphorus, and other dietary components that can pose problems when kidney function is impaired.

The fact that children ages 11 to 17 can have CKD is a surprise to many, given the widespread belief that kidney disease is essentially an older person’s ailment. The disease is relatively rare in children. In adults, it most commonly results from chronic conditions that accumulate over time — particularly diabetes and high blood pressure. In children and adolescents, the causes are more likely to include congenital abnormalities of the kidneys and urinary tract, inherited disorders, and diseases affecting the kidneys’ filtering structures.

Number of Child CKD Cases

The exact number of U.S. children and adolescents with CKD is unknown, in part because there is no comprehensive national pediatric CKD registry or centralized screening and reporting system.

The National Institute of Diabetes and Digestive and Kidney Diseases says, “Researchers don’t know exactly how many children are affected by kidney disease because many children have few or no symptoms in the early stages of the disease.”

However, in its visual data maps and online supplementary tables, the 2025 BMJ Open study “Comprehensive epidemiological analysis of chronic kidney disease in adolescents and young adults (ages 10–24 years) from 1990 to 2021” estimates that between 10,000 and 20,000 new cases of CKD occurred among people ages 10–24 in the U.S. in 2021.

Low Federal Research Investment

The uncertainty surrounding how many children have CKD is part of a broader research problem. Despite the enormous health and economic burden of kidney disease, federal research investment has historically been low relative to its prevalence and the amount the government spends treating the disease.

Among its other goals, the CHOP cooking camp addresses one of the most invisible aspects of being an adolescent with kidney disease — an abiding sense of isolation.

“Most of these kids don’t know other kids who are going through the same thing,” explained Annie Chung, BA, CHOP It Up Program Manager. “Here at the camp, they’re part of a community of others going through the same thing. They really bond around that. Last year, they created a group chat so they could stay connected.”

Amaral noted that the same is true for the parents, which is why the program also offers family workshops in the fall and spring in which parents and their children participate in a one-day cooking event. “It gets the parents and kids interacting as a team to get the various food prep tasks done, and then they share the meal they cooked,” she said.

Why Some Parents Cry

“During a previous family workshop, there was a family that was pre-transplant, and they connected with a family that was post-transplant and were able to ask questions as never before,” said Amaral. “And they kept the relationship going after the workshop. At the end, some of the parents cry because they’re overwhelmed with emotion after finally connecting with others who know what they’re going through.”

At the end of each camp and family workshop over the last 10 years, the researchers have followed up with a feedback survey with both the young patients and their parents. These are the trends shown in the survey responses:

• 75% of children reported greater understanding of healthy eating and kidney diets.
• 95% enjoyed meeting other children with kidney disease.
• 85% planned to cook the recipes at home.
• 86% of caregivers said the camp made conversations about healthy eating easier and changed how their families cook.

Program’s Largest Challenge: Funding

Although the program aligns with the growing national interest in “food as medicine” to prevent chronic disease, Amaral said funding remains the biggest obstacle. Now funded by CHOP, the camp costs up to $7,500 each year and the family workshops up to $1,500, with patients and families paying nothing.

“The largest challenge we face is not direct for us but is for our patients and families — the massive cuts being made in national social determinants of health programs. These impact both the patients as well as health care institutions’ overall financial ability to fund programs like CHOP It Up,” said Chung.

“Our program’s grocery bill gets higher and higher,” she continued. “We used to be able to buy in bulk and, at the end of camp, send extra fresh produce and ingredients home with the kids. We do that a lot less now because those food costs are now beyond our budget.”

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