Some journeys begin before a child can even walk. For Skylar, hers started at just 5 months old, when she broke her left leg. It would be the first of many chapters in a story defined not by hardship, but by an extraordinary spirit that refused to be held back. A week after that initial…
Read MoreBuilding 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…
Read MoreCJ’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…
Read MoreBuilding 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.
Read MoreRare 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…
Read More2026 Young Adult Leadership Program: Hear from our NF Midwest Attendees!
Each year, NF Midwest invests in young adults who are ready to speak up for the neurofibromatosis (NF) community. In 2026, five young advocates traveled to Washington, D.C. as part of NF Midwest’s Young Adult Leadership Program. They met with lawmakers, shared personal stories, and helped make sure NF remains a priority. This program has…
Read MoreA 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…
Read MoreA 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,…
Read MoreA 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,…
Read MoreLegends of the Cause: Gordon and Gert
Legends 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…
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