Archives:
Tell Us Your Story: Andre Cosco — Building a Life Beyond Limitations
Born in Milan and raised in Rho, Italy, Andrea Cosco was diagnosed with neurofibromatosis type 1 (NF1) shortly after birth. Because no one else in …
Tell Us Your Story: Sahil and Shilp Shah Founders of SketchNF
Early Experiences: Two Brothers, One Diagnosis, and the Beginning of a Shared Mission Sahil and Shilp Shah grew up together in Utah in a close-knit …
NF Awareness in Action Event Recap
Building Awareness Through Community: NFX’s Inaugural NF Event On May 17, 2026, in honor of World NF1 Awareness Day, NFX hosted its inaugural NF Awareness …
Tell Us Your Story: Shaun and Tyler Neppl
A story of courage, community, and the powerful bond between a father and son navigating life with NF1. For Shaun Neppl, his son Tyler’s NF1 …
Tell Us Your Story: The Parr Family
Finding Clarity in the Fight: The Parr Family’s Journey with NF When Sean Parr talks about his son James, one thing is immediately clear: joy comes …
Tell Us Your Story: Danielle Grover
Finding Hope, Community, and Purpose on an NF Journey Parenting a child with NF often means learning an entirely new language overnight, navigating specialist visits, …