Neurofibromatosis Midwest

10/23/2026

Please join the team from Mass Geneal NF Clinic for a webinar sharing the results of their My NF Guide study!

All members of the NF community are invited to learn how they improved NF1 care from primary care doctors, and preview the free, online platform they will release next year.

The webinar will be on Zoom on November 4th, 7 pm EST and there will be an opportunity for a Q&A with the team who created My NF Guide!

RSVP: https://forms.cloud.microsoft/r/DtKFT81Acv

Please note: This post will not be monitored for messages or questions by the MyGuide team. If you have any questions about the webinar or the My NF Guide Study, please contact the MGH study team directly at [[email protected]].

10/23/2026

When does an MRI help—and what questions can it leave unanswered?

For families navigating NF1, decisions about scans can feel complicated. In his 2025 iNFo Fair presentation, Robert Listernick, MD, explores screening, vision exams, whole-body MRI, and the benefits and tradeoffs of finding something early.

Watch the full presentation or choose a topic from the playlist. Bring your questions to your care team and keep the conversation going.

▶️ https://www.youtube.com/

10/21/2026

Bring empathy, inclusion, and awareness to your child's classroom or school! 💙

Classrooms That Care is a program that helps students, teachers, and families learn about neurofibromatosis (NF) through engaging educational activities and resources. The program promotes understanding of health challenges, celebrates diversity, and helps create more inclusive school communities, while providing teachers with ready-to-use materials that fit into classroom learning.

Whether you're a parent looking to introduce the program at your child's school or an educator seeking meaningful classroom resources, you can learn more and access materials at https://nfcollective.org/classrooms-that-care/

Classrooms That Care is a collaborative effort of The NF Collective, of which NF Midwest is a proud member.

10/20/2026

Today is World Osteoporosis Day, and it’s an important one for the NF community. 🦴

Research suggests that roughly 20% to 50% of people with NF1 may have osteopenia or osteoporosis. NF1 can cause low bone density, which may lead to a higher risk of fractures.

Bone health screening may be needed for certain individuals, so ask your care team whether it’s right for you or your child.

10/18/2026

Ever leave an appointment thinking, “I meant to ask about that?"

Join NF Midwest for two practical webinars presented by patient education managers from Alexion to help you feel more prepared and confident in your care:

💬 Conversations with your Care Team
October 20 in English • October 21 in Spanish

📖 Understanding Common Medical Terms
November 10 in English • November 11 in Spanish

All sessions: 7–8 p.m. Central, online.

Choose your session and register:

Connecting with others who understand the journey with NF can make all the difference. Our online events offer a welcoming space to learn from experts, share experiences, and build relationships from the comfort of your own home. Whether you’re newly diagnosed, a longtime community member, or a ca...

10/17/2026

Your appointment is short. Your questions matter. 💬

Join NF Midwest for “Productive Conversations with Healthcare Providers,” a webinar presented by patient education managers from Alexion. Whether you’re advocating for yourself or your child, you’ll learn how to:

✅ Prepare before your visit
✅ Organize your thoughts and concerns
✅ Frame thoughtful questions for your doctor and care team

📅 English: Tuesday, October 20 at 7pm CT
📅 Spanish (en español): Wednesday, October 21 at 7pm CT

Join live to ask your questions. Sessions won’t be recorded.
Learn more and register for either session on our Events page: www.nfmidwest.org/attend/

Este seminario web también se ofrece en español. ¡Regístrate en nuestra página de Eventos!

10/16/2026

A negative genetic test can leave you with questions—but it doesn’t automatically undo a clinical NF diagnosis.

In this clip from NF Midwest’s 2025 iNFo Fair, genetic counselor Jordyn Prell explains why clinical findings still matter when genetic testing comes back negative.

Have questions about your results? Your genetic counselor or NF care team can help you understand what they mean for you.

Watch the full video or explore the iNFo Fair playlist on our YouTube channel: https://www.youtube.com/

10/15/2026

🎥 Missed our Power Hour on Tumors in NF1? The recording is now available on YouTube! Watch Dr. Miriam Bornhorst from Lurie Children’s Hospital explain the different types of tumors associated with NF1, how they differ, and why regular monitoring and multidisciplinary care matter.

Look for the chapters so you can skip or go back and watch later!

▶️ Watch now: https://www.youtube.com/watch?v=Kqg0Y0-cv7Q

10/14/2026

Happy Wednesday! 🍂 It’s NF Midwest Fall Bingo! Screenshot the card and see how many squares you can cross off. Can you get BINGO?! Tell us in the comments how close you got and which square you still need to finish your card. 💙

10/13/2026

Ever leave an appointment thinking, “I meant to ask about that?"

Join NF Midwest for two practical webinars presented by patient education managers from Alexion to help you feel more prepared and confident in your care:

💬 Conversations with your Care Team
October 20 in English • October 21 in Spanish

📖 Understanding Common Medical Terms
November 10 in English • November 11 in Spanish

All sessions: 7–8 p.m. Central, online.

Choose your session and register:
https://www.nfmidwest.org/attend/online-events/