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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May is NF Awareness Month! What will you do to help spread awareness?

May is NF Awareness Month! What will you do to help spread awareness?

Learn how you can make a difference and help put NF On the Map by taking the NF Everywhere Challenge.

Learn to Spread Awareness

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

Why 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)…

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Skylar’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…

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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)