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…
Read MoreA Bold Step Forward: Breakthrough in Gene Therapy for NF1
By Karissa Haberkamp | November 18, 2025 Researchers supported by NTAP have announced an exciting breakthrough in gene therapy for NF1. For the first time, scientists have created a smaller, working version of the NF1 gene, called a “mini-NF1.” They have packaged it into a specially engineered viral vector that can target tumor cells more…
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 MoreNovember is National Epilepsy Awareness Month
Did you know that November is National Epilepsy Awareness Month? According to the Epilepsy Foundation, individuals with NF1 are at a higher risk of developing epilepsy, with an estimated incidence of 4–7% compared to the general population, though some studies suggest the rate may be even higher. Epilepsy is a neurological disorder that can result…
Read MoreWhat You Missed: 2025 iNFo Fair
Our 2025 iNFo Fair brought our NF community together with a powerful theme: Be Proactive, Be Informed, Be Heard. The day was filled with learning, honest conversations, and connections. We welcomed families, care partners, clinicians, and advocates to share experiences and ask real questions about living with NF. We opened the morning by sharing what…
Read MoreChallenges of Managing NF1-Related Plexiform Neurofibromas (NF1-PN)
Are you and your HCP often in agreement with your treatment plan for neurofibromatosis type 1 (NF1) or neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) or are there times when you feel misunderstood? Clear communication is key to a successful patient/caregiver and HCP relationship, but are there aspects of our care management that each of…
Read MoreSamJam4NF’s Finale
They gave 10 AMAZING YEARS to the cause and raised a lot of funds. Thank you to the Oswald family and the entire SamJam team! After ten incredible years, the beloved SamJam concert series took its final bow in April and recently sent its last check to NF Midwest. What began as a local event…
Read MoreWomen with NF1 Have a 5X Higher Risk of Breast Cancer – Have a Plan, Get a Scan!
If you or someone you love has neurofibromatosis type 1 (NF1), it’s important to know that women with NF1 between the ages of 30 and 50 have a 5-times higher risk of developing breast cancer. After age 50, the risk is still more than 3 times higher than average. Along with this higher risk, breast…
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