Every person touched by neurofibromatosis or schwannomatosis has a unique journey. Sharing these experiences brings us closer, creating a community of support and understanding that reminds us we’re not alone. Here, we celebrate the stories of the incredible people in our NF Midwest family.
The Faces of NF
Below you’ll find stories of resilience, hope, and connection from individuals and families across Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin.
- Building Something Bigger: Christina’s Commitment to the Columbia Walk4NF
In Columbia, Missouri, the Walk4NF has become something families count on each year. It’s where people show up, find each other, and realize they’re not the only ones navigating life with NF. That kind of connection didn’t always exist for Christina. Neurofibromatosis has been part of her family for generations. Her grandmother had it. Her father had it, along with several… - CJ’s Dino Rompers: Walking for What Matters
When CJ was born, he was already making an impression. Courtney remembers working a long shift on the PCU floor before going into labor. CJ arrived three weeks early, strong-willed from the start. There were small details that stood out, like his slightly larger head, but at the time, he was simply their baby. They named him… - Building Community in Columbia: Kristi’s Leadership with NF Midwest
In Columbia, Missouri, the Walk4NF did not appear overnight. It grew because someone decided that people in her community should not have to travel to feel understood. For Kristi, that decision started years ago. - Rare But Not Alone: Audreys Story
When Audrey was born, there were no signs of neurofibromatosis. She was healthy and adorable. It wasn’t until she was about two months old that Amanda noticed two small spots, one under her arm and one on her abdomen. These had not been there at birth. At Audrey’s four-month appointment, there were five spots. By… - A Routine Appointment That Changed Everything
When Chelsei brought her daughter Willow to the doctor for a diaper rash, she expected a quick visit and a prescription. Willow was just a year old, giggly, and full of energy. This should have been the kind of toddler appointment you barely remember once it’s over. Instead, Chelsei and her husband Kevin walked out… - A Letter From NF Midwest Co-Founder
Posted By NF Midwest | On December 31st, 2025 Because of Her, It Started. Because of You, It Continues. Dear Friend of NF Midwest, My journey started in 1976 with my son, Peter. His symptoms were confusing, and information was almost impossible to find. One doctor finally recognized what was then called von Recklinghausen disease,… - A Letter From Amy
When my son, Benjamin, came home from Camp NF this summer, he couldn’t stop talking about everything he had learned and everyone he had met. Mom Amy Benjamin has neurofibromatosis, and it meant the world to him to be around other kids who truly understand what living with NF feels like. At camp, he swam,… - Legends of the Cause: Gordon and GertLegends of the NF Cause: How Do We Honor Gordon Cummings and Gert Ginsberg? Losing Gordon and Gert In the past few months, NF Midwest bid a sad farewell to two remarkable people who dedicated their lives to the neurofibromatosis cause: Gordon Cummings, who passed away at 93 on February 9th, and Gert Ginsberg, who…
- Miranda – A Face of NF
I was diagnosed at age 2. I have cafe au laits, bilateral optic gliomas, a few cutaneous neurofibromas, innumerable internal neurofibromas, and a large plexiform neurofibroma that sits behind my stomach that I have named PITS (Pain In The Stomach). PITS really lives up to his name. Starting in 2018 he decided to start causing… - Meet Sera, NF Midwest Area Clinical Trial Participant
Sera has a tumor that runs the length of her arm, all the way from her hand up to her shoulder. This inoperable tumor has caused her extreme pain as well as disfigurement. Diagnosed with Neurofibromatosis (NF) Type 1, fifteen-year-old Sera has had to endure many trials in her young life. However, Sera is now…