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.

09/02/2026

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

08/24/2026

🧠 NF Power Hour: Plexiform Tumors in Adults with NF1
📅 Tuesday, September 22 | 🕖 7:00 PM
(Replacing this week's Peer Conversation)

Join us for our next NF Power Hour with Dr. Angela Hirbe, a medical oncologist treating adults with NF at Washington University in St. Louis!

Dr. Hirbe will introduce plexiform neurofibromas (PNs) in NF1, explaining what they are in clear, accessible language. She'll cover current and emerging treatment options, along with complications like pain, disfigurement, and potential for malignant transformation, plus why multidisciplinary care and ongoing monitoring matter for quality of life.

Learn more and register: https://www.nfmidwest.org/events/power-hour-plexiform-in-adults/

08/21/2026

Choose something you already enjoy: walking, pickleball, mini-golf, shooting hoops, or yoga in the park.

Register for free, personalize your fundraising page with a photo and a few words about your connection to NF, then share your link with the people in your life through text, email, or social media. That's really all it takes.

Do it solo, invite a friend, or make it a family day. Any time, any place that works for you.

There's still time to raise awareness, invite others to support NF Midwest, and be part of Walk Your Way.

🔗yourway.walk4nf.org

08/20/2026

Your gift can still go twice as far for young people with NF!

Right now, gifts to NF Midwest's Empowerment Programs are matched dollar-for-dollar, up to $5,000.

💙 A gift of $25 becomes $50.
💙 A gift of $50 becomes $100.

Through Camp NF, Scholarships, and Young Adult Leadership, young people in our community are finding confidence, building friendships, continuing their education, and learning that they are not alone!

Every gift, doubled, means more kids feel that belonging too. Will you help us reach the match?

Give today!

🔗nfmidwest.org/empower26

08/19/2026

📢 Research Opportunity: NIH Study Seeking Pediatric Participants

Researchers at the NIH are looking for children ages 8–17 with NF1 and plexiform neurofibromas (pNFs) to take part in a research study. Participants will complete pain questionnaires electronically from home over a two-week period.

A parent/caregiver must also be willing to complete questionnaires as part of the study.

See the study flyer for full details, and reach out to the study coordinator listed with any questions.

Address

473 Dunham Road, Ste 3
Saint Charles, IL
60174

Telephone

+16309453562

Website

http://www.nfmidwest.org/

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