Celebrating 35 Years
neurofibromatosis walk

The Walk That Wasn't Coming Together While Staying Apart

Join us in raising FUNds and Awareness in the time leading up to October 17th when with will have an online community CELEBRATHON!


The Faces of Neurofibromatosis

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Read Their Stories


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Improving the Lives of People with Neurofibromatosis

Neurofibromatosis Midwest is dedicated to the increasing number of men, women and children challenged by neurofibromatosis. We’ve been a nonprofit 501(c)3 since 1982, and we are determined to continue our work to educate, comfort, improve clinical care and fund research for treatments and a cure. We are staffed by people with a personal interest in NF, with real experience and a determination and motivation to use precious funds in an efficient manner.

Our service area includes Illinois, Wisconsin, Indiana, Iowa, Kentucky and the eastern half of Missouri.


No Symposium and iNFo Fair in 2020

Due to the pandemic there will be NO NF Midwest Symposium and iNFo Fair this year.  We may present short…

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Summer 2020 Neurofibromatosis Midwest Newsletter

Check out our Summer 2020 NF Midwest Newsletter! SUMMER 2020 NEWSLETTER PDF The highlights of this issue include… Page 1…

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Volunteer Spotlight : Tim E

Meet Tim and Sue! Tim is one of our amazing, out of this world, extraordinary volunteers who heads up the…

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New Survey for Adults Neurofibromatosis or Schwannomatosis

Researchers are looking for adults with neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis to participate in an anonymous online…

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DIY Fundraising : MavMan Sidekicks

We love to highlight rock star fundraising teams and MavMan Sidekicks did something extraordinary in just 7 days! Kara, Maverick’s…

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NF MIDWEST C.A.R.E.S. to improve the lives of people with NF




suffer from Neurofibromatosis

We support

6 states

13 clinics

1.5 million

In Research & Care

Stay Informed with NF Midwest See All NF Posts

Sponsorship Shoutout: Hartigan’s Heroes and Romeoville Toyota

Annie, the captain of Hartigan’s Heroes, heard about Toyota Cares from a neighbor. She reached out to her local Toyota…

Fundraiser Feature : Jessica and Ellies Crew

Let’s say hello to Jessica and her family! Her team, Ellie’s Crew, has been hard at work this year! Jessica…

No Symposium and iNFo Fair in 2020

Due to the pandemic there will be NO NF Midwest Symposium and iNFo Fair this year.  We may present short…

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