Neurofibromatosis Midwest

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Neurofibromatosis Midwest

NF Midwest is committed to improving the lives of children, adults, and families impacted by NF and SWN. No one Fights alone!
(1)

Our continued focus is on Clinics, Awareness, Research, Education, and Support in Illinois, Indiana, Iowa, Kentucky, & Wisconsin.

09/08/2026

⏰ Don't forget to register!

Our NF Power Hour on Plexiform Tumors in Adults with NF1 is coming up Tuesday, September 22 at 7pm CDT, featuring Dr. Angela Hirbe from Washington University in St. Louis.

She'll cover what plexiform neurofibromas are, treatment options, and why ongoing monitoring and multidisciplinary care matter.

📌 For more information and registration, see link.

🔗https://www.nfmidwest.org/events/power-hour-plexiform-in-adults/

09/07/2026

September is Craniofacial Acceptance Month, and it's a cause close to our NF community. All forms of neurofibromatosis can affect the craniofacial region, whether through tumors that develop on or near the face, or through bone and skeletal changes that can affect the structure and appearance of the face and skull.

These differences are just one part of someone's NF journey, and they don't define a person's worth, beauty, or story. This month, we're uplifting and celebrating individuals in our community who navigate craniofacial differences, and reminding them that they are seen, valued, and celebrated exactly as they are.

If you or someone you love has a craniofacial difference and would like to share your story, we'd love to hear it. Feel free to comment below or reach out to us directly. 💙

09/04/2026

⚠️ Heads Up: T-Shirt Scam Alert

We've noticed a scam making the rounds in NF Facebook groups. Fake accounts post photos of a t-shirt like they're a real community member, then comment a link saying "you can buy it here!" These accounts often reuse the same photos (with different shirt designs) or same shirt (with different photos) across multiple posts, and the photo doesn't always match their profile picture.

If you order from one of these links, you may not receive anything, receive a poor-quality knockoff, or risk your payment info being misused — and getting your money back isn't guaranteed.

This doesn't mean all merch sites are scams — there are plenty of legitimate ones out there. Just be cautious with unfamiliar links, especially with how easy it is now to fake designs or use AI-generated images.

Before you buy from a link in a post or comment:

Does the account's photo match their profile?
Have you seen this same post/account before?
Is the seller someone you recognize or can verify?

Not sure about something? Ask in the comments or message us — happy to help you check before you buy.

09/03/2026

Amy is one step closer to her dream, and your gift can help more students get there too. 💙

Diagnosed with NF1 at six months old, Amy has never let NF define her potential. Today, she's continuing her education at Concordia University, Nebraska, working toward becoming a leader in pediatric medicine.

"With this investment in my education, I am one step closer to achieving my ultimate goal: becoming a leader in public health and pediatric medicine." — Amy, NF Midwest 2026 Scholar

Right now, every gift is DOUBLED.
💙 $25 → $50
💙 $50 → $100

For students like Amy, a Scholarship is more than financial support. It's a community saying we believe in you.

Matching funds are still available for NF Midwest Scholars and other Empowerment Programs.

Give today and double your impact. Link in comments. 💙

09/02/2026

September is Pain Awareness Month. Over half of people with NF experience some kind of pain, including chronic pain. Check out our blog from last year on NF and pain, which features some great resources.

https://www.nfmidwest.org/blog/pain-awareness-month/

09/01/2026

🏆 The Walk4NF leaderboard is heating up — and the stakes are colorful!

Hax Attack has climbed to $8,814, with NF Fighters right on their heels at $8,026. That $788 gap could disappear overnight, and several other teams are still very much in striking distance. Don't count any team out.

Remember what's on the line: the top team gets to choose the T-shirt color for every 2027 Walk4NF event.

One month left to make your move. Where will your team land by September 30th?
👉 Share your link. Ask your people. Check for employer matches.
⏰ Ends 9/30 at midnight CT

08/28/2026

⏰ Don't forget to register!

Our NF Power Hour on Tumors in NF1 is coming up Tuesday, September 15 at 7pm CDT, featuring Dr. Miriam Bornhorst from Lurie Children's Hospital.

She'll cover the different types of tumors associated with NF1 and why regular monitoring and multidisciplinary care matter.

For more information and registration, visit our event page:

🔗https://www.nfmidwest.org/events/tumors-in-nf1/

08/27/2026

Walk Your Way 2026 is wrapping up, but your fundraising ideas don't have to. 💜

Thank you for walking, rolling, donating, sharing pages, and telling people about NF along the way. Whether you raised $10 or ran a whole campaign of your own, you helped more people understand what NF is, and that matters just as much as the dollars raised.

Fundraising for NF Midwest can keep going all year. Some of the easiest ideas come from things you're already doing:

🎂 Skip the gifts, ask for donations for your birthday instead
🍔 Turn a backyard cookout into a fundraiser
🏃 Already signed up for a local race? Fundraise while you run it
🏢 Challenge your coworkers to a friendly competition for a cause
🍋 A lemonade stand or bake sale can go a long way

Got an idea, even a rough one? We'll help you shape it into a page and walk you through the rest. Reach out to Jennifer: [email protected]

08/26/2026

A photo within a photo! 📸 Jenna and Dawn Pederson are holding a picture from a past Walk4NF, back when Jenna was just 5 or 6, still in the frame they earned for taking first place that year. We love when our walkers join us year after year, thank you Jenna and Dawn!

08/25/2026

NF Midwest’s August update is packed with community stories, clinic news, events, and ways to get involved.

Don’t miss what’s new, including Parent & Peer Conversations.

https://tinyurl.com/NFAug26Update

Address

473 Dunham Road, Ste 3
Saint Charles, IL
60174

Telephone

+16309453562

Website

http://www.nfmidwest.org/

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