The University of Pittsburgh and the Eye and Ear Foundation of Pittsburgh have received a $2,182,900 multiyear grant from the Gilbert Family Foundation to support the organization’s Vision Restoration Initiative (VRI), which aims to prevent blindness caused by mutations in the neurofibromatosis type 1 (NF1) gene.

The National Cancer Institute (NIH) is currently recruiting individuals and families affected by Neurofibromatosis for two separate virtual research studies. Each study focuses on improving quality of life and strengthening future research for the NF1 community. Your lived experience can directly shape what comes next.

Mark your calendars for May 29th, 2026, and join us for the inaugural NF Strong Spring Concert, a special event created to grow and develop the local NF community in Georgia! The celebration takes place at Woodstock Arts Event Green, 111 Elm St., Woodstock, GA, 30188, from 5:30–9:30 pm.

We are honored to announce that this year’s Sam Leary Advocacy Scholarship has been awarded to NF Advocate Alex Baden. It is especially exciting to have three generations on the Hill—and to welcome our very first Advocate from Alaska. Alex’s passion and enthusiasm shine brightly as she advocates in honor of her mother and grandfather. Through her voice and dedication, Sam’s legacy of courage, compassion, and action lives on.