Everyday Skills in NF1: What Parents Can Watch for and How to Help A practical resource for parents and caregivers from NF Midwest Parent Conversations Parents and caregivers affected by NF carry a lot of questions, and that’s normal. Some are medical. Some are emotional. And many are practical: That is why NF Midwest created NF Parent Conversations, a welcoming online…
Read MoreMeet the 2026 NF Midwest Scholarship Recipients
The NF Midwest Scholarship Program is proud to celebrate another year of supporting students with neurofibromatosis as they work toward their educational dreams. Each year, NF Midwest awards scholarships to students across our six-state region. These students are pursuing their goals while also navigating life with NF, and we are honored to play a small…
Read MoreWhy Clinical Trials Matter, and Why They Matter Especially for NF
Every treatment that exists today: every medication, every therapy, every breakthrough, started somewhere. It started with a question, a hypothesis, and eventually, a clinical trial. May 20 is National Clinical Trials Day, a moment to recognize the remarkable system that turns scientific ideas into real-world answers. For the NF community (patients, families, caregivers, and advocates)…
Read MoreUniversity of Chicago NF Clinic Update
Dr. James Tonsgard, longtime neurologist and Director of the Neurofibromatosis (NF) Clinic at the University of Chicago, has announced that he will retire from seeing patients at the end of 2026. Dr. Tonsgard has served as a clinician at the University of Chicago for 49 years and has led a dedicated NF clinic for more…
Read MoreSkylar’s Story: Strength, Courage & a New Beginning
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 MoreUniversity of Illinois Expands Lifespan NF Care
NF Midwest is pleased to share an important milestone for the neurofibromatosis (NF) community. Dr. Nikolas Mata-Machado and Dr. Stefania Maraka have been added to the NF Clinic Network, a designation by the Children’s Tumor Foundation. We here at NF Midwest are proud of the work that Dr. Mata-Machado and Dr. Maraka began years earlier….
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…
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