Neurofibromatosis Midwest

04/22/2026

Is your child ready for a camp made just for them?

We know sending your kid away for a week can feel overwhelming, especially when NF is part of the picture. That's why we're hosting a free online info session so you can get all your questions answered before making any decisions.

Summer Camp Info Session: April 30th | 6:30--7:00 PM CST / 7:30--8:00 PM EDT

Camp NF, hosted by Brainy Ridge in St. George, VA, is a 7-day residential camp designed specifically for kids and teens ages 7-18 living with NF1, NF2-related SWN, and schwannomatosis. Medical staff, including physicians, nurses, social workers, and psychologists, are on-site 24 hours a day.

This is a place where kids connect with others who truly get it, build confidence, and discover their strengths.

Join us online and hear directly from the people who make camp happen. Ask your questions, voice your concerns, and see if Camp NF might be the right fit for your child.

Sign up: https://www.nfmidwest.org/events/learn-about-camp-nf-brainy-ridge/

04/21/2026

For families living with Neurofibromatosis, finding others who truly understand can feel impossible. That's exactly why Christina decided to do something about it. What started as a simple idea has grown into something the Columbia, Missouri community returns to year after year. Here's how it happened.

In Columbia, Missouri, the Walk4NF has become something families count on each year. It’s where people show up, find each other, and realize they’re not the only ones navigating life with NF.  That kind of connection didn’t always exist for Christina.  Neurofibromatosis has been part o...

04/20/2026

Tomorrow is the day! Raising a child with NF means juggling a lot, and siblings feel that too.

If you have a child with NF and other kids at home, don't miss 7 Simple Strategies for Sibling Support, a free webinar with Emily Holl of The Sibling Support Project. She'll share practical, easy-to-use strategies to help you support ALL your kids.

There's still time to grab your spot!

April 21 | 7:00–8:00 PM CDT | Free & Online
Register here: nfmidwest.org/sibling-support

04/19/2026

04/18/2026

Meet CJ, an 18-month-old with a personality bigger than his roar. 🦕

When his mom Courtney, a nurse, first noticed something different about her son, she did what any parent would do: she dove into research, asked every question, and fought to find answers. What she found was a community she didn't know she needed.

We're sharing CJ and Courtney's story on the blog today, a journey about learning to navigate the unknown, leaning on each other, and showing up for the ones you love.

Read the blog here: https://www.nfmidwest.org/blog/cjs-dino-rompers/

04/17/2026

Hunter's hometown of Madisonville, KY declared May NF Awareness Month, and it's all thanks to her! So proud, Hunter!

Want to make the same thing happen in YOUR town? There's still time to get a proclamation for May. Contact us and Jennifer will walk you through every step.

And if a proclamation isn't your thing, there are plenty of other ways to take action for NF Awareness Month. Just reach out and we'll find the right fit for you.

04/16/2026

We’re sharing an important update from the University of Chicago NF Clinic.

After nearly five decades of caring for patients, Dr. James Tonsgard has announced that he will retire from seeing patients at the end of 2026. While this marks a meaningful transition, patients can be reassured that care will continue without interruption, and that Dr. Tonsgard will remain engaged in NF research and broader patient care.

We’re grateful for his extraordinary legacy and confident in the clinic team moving forward.

Read more about what this means for patients and families:

University of Chicago NF Clinic Update % %

04/13/2026

Missed our April update? There's a lot going on this month!

From a special webinar on supporting siblings of kids with NF, to a Camp NF info session, peer conversations, and Walk4NF 2026 registration. We've got something for everyone in the NF community!

Catch up on everything here 👉 https://tinyurl.com/NFMidwestApril26

04/11/2026

Happy National Siblings Day!

Got a child with NF and other kids at home? This one's for you.

We're teaming up with The Sibling Support Project for a free webinar on April 21st from 7–8 PM CDT!

7 Simple Strategies for Sibling Support features Emily Holl, Director of the nation's first program dedicated to the lifelong concerns of siblings of people with developmental and health conditions. She'll walk through common experiences siblings face and share practical strategies parents can use to support their wellbeing.

Local resources will also be shared.

April 21 | 7:00–8:00 PM CDT Free & Online
Register here: https://www.nfmidwest.org/event/7-simple-strategies-for-sibling-support/

04/07/2026

Calling all NF parents & caregivers!

Want to learn more about the Camp NF experience? Join us for a FREE online info session on April 30th with Brainy Ridge leaders!

6:30–7:00 PM CST | 7:30–8:00 PM EDT
Virtual — join from anywhere!

Camp NF at Brainy Ridge in St. George, VA is a 7-day, 6-night residential camp for kids ages 7–18 living with NF1, NF2-related SWN, and schwannomatosis. With medical staff on-site 24/7 and a community of peers and mentors, it's a place where kids can learn, grow, and thrive.

This is your chance to get all your questions answered before registration fills up!

Register: https://www.nfmidwest.org/event/learn-about-camp-nf-brainy-ridge/

04/02/2026

Thank you Kristi!

It's National DIY Day, and Kristi is the perfect example of doing it yourself! Kristi, captain of the NF Fighters team in Columbia, has organized a Wendy's fundraiser for her team while also spreading NF awareness. We want to thank Kristi for her incredible dedication to the NF cause. Her efforts span throughout the year and never go unnoticed!

It's people like Kristi who make our Walk community so special, going above and beyond, year-round, to make a difference. We are so grateful!

04/02/2026

💙 to the moments that move us… 💛

From the smiles at the starting line to the powerful stories shared along the way—Walk4NF is more than just a walk. It’s a community. It’s hope. It’s impact.

Every step you see in this video represents someone fighting, someone supporting, and someone refusing to give up.

Because of YOU, families are finding connection, resources, and strength through NF Midwest.

🎥 Take a look back—and get ready to be part of what’s next.

👉 Join us this year: www.walk4nf.org

Let’s make even more memories together.