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

In Columbia, Missouri, the Walk4NF did not appear overnight. It grew because someone decided that people in her community should not have to travel to feel understood.

For Kristi, that decision started years ago.

Back in 2012, long before the Columbia Walk4NF became what it is today, she started a local support group. At the time, she felt deeply alone. She had friends who cared about her but could not fully understand what living with neurofibromatosis meant daily.

Instead of accepting that isolation, she went looking for others.

“I didn’t want to travel to go to one,” she says, reflecting on why she chose to build something locally instead of driving to another city. She wanted a connection close to home. She wanted people in mid-Missouri to know they were not the only ones.

That early step laid the groundwork for what would later become the Columbia, Missouri Walk4NF under NF Midwest’s leadership.

With support from NF Midwest, the walk became part of a larger regional effort to raise awareness and funds for research, education, and support. Kristi stepped into a leadership role and has been a steady force ever since. Her team, NF Fighters, shows up each year with heart and determination.

Walk day, she says, is busy. Sometimes it feels a little crazy. There are people to greet, details to manage, and a schedule to keep. But when it’s over, something shifts.

“It feels great to have raised so much money and awareness.”

For Kristi, the walk is about more than a single morning event. It is about building a space where people can meet others who truly understand what life with NF looks like. It is about creating belonging in a place where she once felt alone.

She is honest that organizing and leading takes work. “It’s a lot of work,” she admits. But she also believes it is worth it. Through the walk and the support group, people in Columbia now have access to a larger NF Midwest community. They have resources, connections, and reassurance that they are not facing this diagnosis by themselves.

As a paraprofessional who works one on one with students in a school, Kristi also sees hope in the younger generation. One of her students often tells her that he plans to become a doctor so he can cure her tumors. She smiles when she shares that story. There is something powerful in a child’s compassion and determination. Kids, she says, are often the most understanding. They ask questions directly, but with open hearts.

That hope fuels her.

Kristi’s leadership began with a simple desire not to travel for connection. Today, because of her commitment and NF Midwest’s partnership, families in Columbia have a walk to call their own.

Recent Posts

  • 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... Read More
  • 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.... Read More

Responses

Respond

Your email address will not be published. Required fields are marked *