It's Time to Walk4NF!

Every step taken strengthens our community, fuels research and support, and reinforces that when we move forward together—side by side, step by step—No One Fights Alone!

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Ways to Meet and Learn from Others

Ways to Meet and Learn from Others

We Learn Best From Each Other. We Fight Best Together. Learn about the ways NF Midwest can connect you to community.

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You Can Make Difference

You Can Make Difference

There are many ways to give, beyond donating cash.

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Walk4NF

Build and support the NF/SWN community while raising funds and awareness. Then celebrate with a casual walk with serious fun! If you can’t make it to one of our walk events, create an event of your own that fits your timeline, your location, and is something YOU want to do!

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Learn More About NF

University 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…

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University 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….

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Meet the Community. Share Stories.

Neurofibromatosis and schwannomatosis are complicated to say. Care, support, and navigating your journey with it doesn’t have to be. No one should fight alone. We’re here with you and in this together.

One in 2,000 People have some form of NF. They are rare genetic conditions.
3 Conditions NF is an umbrella terms for at least three condtions. Neurofibromtosis Type 1 (NF1), NF2-Related schwannomatosis (NF2-SWN), and other schwannomatosis (SWN)