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 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 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…
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 MoreEvaluation of Acceptance and Commitment Training (ACT)
Remote Research Study: Support for Caregivers of Children with RASopathies Offered by: NIH/National Cancer Institute, Bethesda MDConducted by: Dr. Staci Martin Peron A remote research study from the National Cancer Institute is evaluating Acceptance and Commitment Training (ACT), a method that has been effective in helping parents of individuals with other chronic conditions. The study…
Read MoreStudy on Tumor Visibility
Offered by: NIH/National Cancer Institute, Bethesda MDConducted by: Dr. Staci Martin Peron You can help researchers better understand the experiences of people with NF1. The National Cancer Institute (NCI) is conducting a virtual study for individuals with visible plexiform or cutaneous neurofibromas, and you may be eligible to participate. About the Study The goal of…
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