Neurofibromatosis Program Patient Stories

Conor, 16, and his parents have been traveling to CHOP from South Carolina several times a year since he was an infant for NF1 treatment and clinical trials.

Carlee, 4, receives treatment for the optic pathway tumor that caused vision loss. But she’s also gotten extensive psycho-social support.

When Abby was a toddler, she was diagnosed with a disorder that causes tumors and has been receiving treatments at CHOP. Abby is a Patient Ambassador for the 2016 Parkway Run & Walk. Read about her amazing efforts to help other kids undergoing chemotherapy.

Kelley Schmidt and Kristin Camiolo, who both have daughters followed by the Neurofibromatosis Program at The Children’s Hospital of Philadelphia, share their stories in hopes of helping other families who are facing an NF1 diagnosis.

Cullen Mitchell has neurofibromatosis, a genetic disorder. His parents, Kelly and Ken, credit the Neurofibromatosis Program at CHOP with helping them manage the complexities of caring for a child with this condition.