Neurofibromatosis Midwest

05/01/2026

It's May and NF Awareness Month is here! 💙

Whether you walk, share, or simply spread the word, every action this month matters. Here's how to get involved:

👟 Walk4NF – join our community at a walk event near you and help us reach our goal! Register at walk4nf.org.

📄 Challenge – print a free flyer and post it everywhere. Work, store, library, your local coffee shop. Snap a photo and use our hashtags when you do! You may even win a prize! See more about the NF Everywhere Challenge and awareness tips here: nfmidwest.org/nfeverywhere

🛍️ Shop our store – grab NF awareness gear and sport it all month

💙 Turn your porch lights blue and green – show your NF support right from your front door

📜 Get a proclamation – reach out to your town or county to declare May NF Awareness Month in your community

No one fights alone. Let's make NF impossible to ignore this May.

04/29/2026

Great work by the Klein family, who recently requested and received a proclamation from the City of Palos Heights declaring May as NF Awareness Month. The Kleins fight every day for their son, Ben, and were joined for the occasion by the Haslam family, whose NF warrior is Jay. Both families join us each year at the walk in Naperville.

Moments like this remind us that no one fights alone.

Way to go!!!

04/27/2026

See ALL these goodies?! They could be YOURS! 🎁

These are the tiered appreciation gifts you can earn at our Walk4NF. The more you raise, the more you take home!

Raise more = earn more prizes!
And the best part? Each tier includes everything below it, so hit the top and walk away with it ALL!

✅ Sign up
👟 Come out and walk
💙 Have fun & raise funds for NF research

What are you waiting for? Register today and start fundraising!

Register: www.walk4nf.org

04/26/2026

Chicago suburbs friends, mark your calendars!

Town House Books and Café in St. Charles, IL is making May 5th count. They have chosen NF Midwest as their Giving Tuesday charity, which means 20% of their profits for the day come right back to us.

Swing by for a sandwich, grab a dessert, or pick up a book. However you enjoy Town House, doing it on May 5th makes a real difference. They are open 9am to 4pm, so plenty of time to stop in!

Town House Cafe has supported NF Midwest for many years, and we are so grateful to have them in our corner once again.

Know someone in the St. Charles or Geneva area? Share this with them. Every visit adds up!

Head to our event page or Town House's page to learn more.

Event: https://www.nfmidwest.org/events/town-house-books-and-cafe-giving-tuesday/

04/24/2026

NF Awareness at Panera!

The Challenge has already begun! One of our amazing community members wasted no time putting up flyers around their town, and here is a flyer spotted at their local Panera.

Want to join them? Put NF on the Map this May by printing our free flyers and posting them anywhere and everywhere. Be creative, have fun, and snap a photo when you do. You can start now or keep it going all month long.

Every flyer in every window, bulletin board, and break room gets us one step closer to making NF impossible to ignore.

Get your flyers here: https://www.nfmidwest.org/get-involved/participate/awareness-month/

04/23/2026

Our Second NF1 Peer Conversation is Coming Up!

Join us this Tuesday, April 28, for our next NF1 Peer Conversation, a space for adults living with NF1 to connect, share, and support one another.

This week, we hope to talk about adult care for those living with NF1, with a focus on our Midwest community in Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin. That said, ALL topics are welcome, bring your questions, experiences, and whatever is on your mind!

Whether you're newly diagnosed or have been living with NF1 for years, this conversation is for YOU.

Tuesday, April 28
Midwest focus: IL, IN, IA, KY, MO, WI

Register and learn more here: https://www.nfmidwest.org/events/nf1-peer-conversations/

We'd love to see you there!

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.