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…
Read MoreYour Letter Can Make a Difference for NF Research
We are collecting letters to hand-deliver to your members of Congress. Sharing your story helps emphasize the importance of continued NF research funding through the Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health (NIH).
Read More2026 Scholarship Applications Are Open!
NF Midwest Scholarship Applications are now open! This is your sign to kick off the new year by pursuing your post–high school education goals. The scholarship is available to adults with NF, including neurofibromatosis type 1, NF2-related schwannomatosis, and all other types of schwannomatosis. Applicants must live within our service area of Illinois, Indiana, Iowa,…
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 MoreNF Midwest Participates in the 2025 REiNS Collaborative Meeting
Posted By NF Midwest | On December 30th, 2025 The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) Collaborative is an international effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2-related schwannomatosis, and schwannomatosis. In 2011, a team of neurofibromatosis clinicians and researchers formed a working group called Response…
Read MoreNF1 Treatment News: FDA Expands Selumetinib (KOSELUGO) Approval to Adults
NF Midwest is excited to share important news for our community, news that brings real hope to people living with Neurofibromatosis Type 1 (NF1). The FDA has officially approved selumetinib (KOSELUGO) for adults with NF1 who have symptomatic, inoperable plexiform neurofibromas (PN). While this MEK inhibitor has been available to children for several years, adults…
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