Neurofibromatosis type 1 (NF1) is a genetic, neurological disorder that causes painful tumors to develop in the nervous system, brain and spinal cord. Children with NF1 are at an increased risk of developing low grade gliomas (LGG), tumors in the optic pathway that present a major challenge to surgery.
The standard treatment for children with LGGs is chemotherapy—15 months of weekly clinic visits and IV treatments.
St. Luke’s is currently conducting trials of an alternative treatment that reduces hospital visits from weekly to monthly, and replaces IV with oral medication that patients can take at home. This allows children to return to school and maintain a more normal routine.
The trial also compares visual outcomes for patients to the standard treatment—a study component that required the purchase of thousands of dollars in optical testing equipment, which was beyond the Institute’s budget.
If not for funds from KTM, St. Luke’s could not have participated in this study, which holds the potential not only to improve treatment, but to to give pediatric cancer patients a childhood.