Emma is a nine year old Uconn basketball fan, who loves to laugh, sing, play adaptive sports and draw. She has a spirit that truly lights up a room. What you might not see is the constant battle she faces every day against a genetic condition called Neurofibromatosis Type 1, or NF1. It is a condition where benign tumors grow on nerve tissue and Emma's was discovered when she was just four years old.
When Emma was six, we discovered that her NF1 caused an optic glioma—a tumor on the optic nerve in her brain. To manage it, she underwent two neurosurgeries, the placement of a shunt to regulate brain fluid, and began specialized treatment from a pediatric oncologist. The mass caused visual impairment, which has recently worsened over the past few months. She has faced various medication side effects and difficulties in school. Like so many families living with healthcare needs, we simply don’t know what the next blood test or the next MRI will bring. Your support ensures that an amazing organization like NF Northeast can continue their vital work. They provide a lifeline for families like ours by advocating for NF1 awareness, fostering community connections, offering medical stipends, and funding the critical research needed to find a cure. Every dollar ensures that every child (and their family) facing NF-related health challenges receives the support they deserve.