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

09/16/2026

Every NF story matters — including yours.

Whether you're living with NF, caring for someone who is, or supporting a loved one from a distance, your experience helps others in our community feel less alone. If you're in Illinois, Indiana, Iowa, Kentucky, Missouri, or Wisconsin, we'd especially love to hear from you. Your story helps us better understand and serve our region.

Haven't shared your story with us yet? We'd love to hear it. With your permission, we may also feature it on our website, newsletter, or social media to help others find hope and connection.

Already shared yours a while back? Life changes, and so do NF journeys. Feel free to send us an update anytime.

📩 Share your story here: nfmidwest.org/get-involved/connect/share-your-story or email Jennifer at [email protected]

09/14/2026

⏰ It's almost here! Don't forget to register!

Our NF Power Hour on Tumors in NF1 is TOMORROW, 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, see link in comments

09/11/2026

Cheering Chloe on as she kicks off a new school year! 🎉 We're so proud to support her through our NF Midwest scholarship program, one small way we help our NF community chase their goals. Wishing you an amazing year, Chloe!

09/10/2026

Hunter walked into her first meeting with a lawmaker's office not knowing what to expect. By the end of the week, she found her voice. 💙

This past January, Hunter was one of five young adults NF Midwest sent to Washington, D.C. through our Young Adult Leadership Program. They met with lawmakers, shared their experiences living with neurofibromatosis, and helped keep NF a priority on Capitol Hill.

"This experience made me stronger and gave me the courage to speak up about neurofibromatosis." — Hunter, Young Adult Leadership participant

Right now, every gift is TRIPLED.
💙 $25 → $75
💙 $50 → $150

Thanks to a generous anonymous donor, gifts to NF Midwest's Empowerment Programs are matched dollar-for-dollar, up to $5,000.

Help send the next young adult like Hunter to Washington. Give today, link in comments. 💙

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

Address

473 Dunham Road, Ste 3
Saint Charles, IL
60174

Telephone

+16309453562

Website

http://www.nfmidwest.org/

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