Anyone from YNHHS is welcome to join Dr. Rath's team. ~~~~~~~~~~~~ Here is her story: ~~~~~~~~ My 16-year-old daughter Jane was diagnosed with neurofibromatosis (NF) when she was just a few months old. NF is a genetic condition which causes multiple nerve tumors. Jane’s primary manifestation of NF is a large plexiform neurofibroma—a diffuse, rope-like tumor—that involves her ear, jaw, mouth, face, and neck. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ Jane was referred to the National Institutes of Health when she was three years old because of the rapid growth of the tumor, and she’s been in various clinical trials there since that time. Jane was one of the first 24 children in the world to take the drug selumetinib its initial Phase I clinical trial back in 2014, and has been on this drug ever since. The drug has helped to keep her facial plexiform stable, and she celebrated with the rest of the NF community when the FDA finally approved selumetinib, the first drug ever approved for NF, in April 2020. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ Jane has had a few other complications from NF1, including surgery at age 13 to remove another tumor from her kidney. She continues to get her NF care at NIH, which involves twice a year multi-day trips to Bethesda for check-ups and testing. Jane has had dozens of MRIs in her lifetime; at last count she has had 35 "MRI days”—each day often including 2-3 different scans. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ We need your help to create a world where the burden of NF does not exist for Jane and so many others living with NF.