43 Years of Care and Ensuring No One Fights Alone!

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The Faces of Neurofibromatosis

See them, hear them, care about them!

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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.


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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…

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Building Community in Columbia: Kristi’s Leadership with NF Midwest 

In Columbia, Missouri, the Walk for NF did not appear overnight. It grew because someone decided that people in her…

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More Articles
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Rare But Not Alone: Audrey’s Story

When Audrey was born, there were no signs of neurofibromatosis. She was healthy and adorable. It wasn’t until she was about two months…

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More Articles
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A 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…

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2026 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…

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Stay Informed with NF Midwest See All NF Posts

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…

Building Community in Columbia: Kristi’s Leadership with NF Midwest 

In Columbia, Missouri, the Walk for NF did not appear overnight. It grew because someone decided that people in her…

Rare But Not Alone: Audrey’s Story

When Audrey was born, there were no signs of neurofibromatosis. She was healthy and adorable. It wasn’t until she was about two months…

A 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…

2026 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…

A 2026 Update on Pain in NF1

A 2026 Update on Pain in NF1:Where We Have Been and Where We Are Going By Andrea Baldwin, CRNP and…

Your Letter Can Make a Difference for NF Research

NF Midwest advocates will be in Washington, D.C., February 22–24 to urge Senators and Representatives to continue supporting research for…

2026 Scholarship Applications Are Open!

NF Midwest Scholarship Applications are now open! This is your sign to kick off the new year by pursuing your…

A Letter From NF Midwest Co-Founder

Because of Her, It Started. Because of You, It Continues. Dear Friend of NF Midwest, My journey started in 1976…

NF Midwest Participates in the 2025 REiNS Collaborative Meeting 

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,…

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