Sahil Shah was diagnosed with NF1 at a very early age. Growing up, he was constantly reminded of his condition by the various medical appointments and treatments that he had to undergo. He went into his first appointment with his NF specialist and remembers being terrified at the fact that his “bumps” were really tumors and that he had an increased risk of cancer due to NF1. As he returned home from the appointment, he made the mistake of looking up NF1 online and immediately became confused and anxious. Over the course of the next year, one of the tumors on his forehead continued to grow rapidly, and his NF doctor decided it was time to get surgery. As the years went on, he developed plexiform neurofibromas in his neck that have often caused him to have intense migraines and headaches. One day, while expressing the pain from a migraine he had the night before to his brother, they thought, “What if we created a community of kids and young adults who could understand what it’s like to live with NF?” This is where SketchNF was born. We believed that, through art and social media, we could create a wide-spanning pediatric community that would ensure no child with NF would ever have to feel alone again.

Sahil’s determination remains steadfast as he continues to pursue his diverse range of interests. From playing tennis, ping pong, and pickleball, to working in a lab conducting scientific research on NF this summer, Sahil finds great joy and fulfillment in these endeavors, refusing to let his condition hold him back.