Imagine being told that you—or your child—had a genetic disorder for which there are few medical treatments and no cure. That’s the reality for more than 2.5 million people worldwide living with neurofibromatosis (NF), including myself and my two sons.

My journey with NF began 20 years ago when my oldest son was born. But the wave of fear and uncertainty truly set in 7 years ago, when it was discovered—at just 17 months old—that my youngest son had bilateral optic gliomas, tumors on both optic nerves. Six months later, he was diagnosed with a separate pediatric cancer, compounding the challenges we were already facing.

NF is a group of genetic conditions, including all forms of neurofibromatosis and schwannomatosis, that cause tumors to grow on nerves throughout the body. It can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer.

Like so many others, we were left feeling hopeless—until we found community, purpose, and strength through the Children’s Tumor Foundation (CTF). We also found a community of people through social media support groups—one in particular on Facebook called Faces of Neurofibromatosis—where individuals and families share their experiences, offer support and remind one another that we are not alone.

CTF is the global leader in driving research and accelerating treatments for NF. The Foundation played a vital role in the approval of Koselugo (selumetinib) in 2020 and Gomekli (mirdametinib) in 2025—the first-ever FDA-approved treatments for NF. These are major breakthroughs, but more options are urgently needed.

My youngest son recently began Koselugo to treat a plexiform neurofibroma. While we are hopeful, we know there’s still a long road ahead. Recent cuts to research funding threaten to slow the progress families like ours desperately need.

This May, during NF Awareness Month, I’m joining a nationwide effort to shine a light on this condition. As part of this effort, the Dean B. Ellis Library clock tower at Arkansas State University will be lighting up blue on May 17th in honor of World NF Awareness Day.

Raising awareness is one of the most powerful tools we have in this fight. Together, through community, advocacy, and science, we can advance treatments and one day find a cure for NF.

Categories: Opinion