Neurofibromatosis Midwest

11/02/2026

We 💙💚 our littlest advocates! This young man had a lemonade stand and collected smiles and change to send to us here at NF Midwest. All of us in the office were touched by his big heart and his efforts to help our mission to improve the lives of children, adults, and families impacted by neurofibromatosis and schwannomatosis.

This is the very definition of No one Fights alone!

Are you inspired to do something? Let us know! DM us here or comment below. We'll be in touch!

10/30/2026

Not every tumor is cancer—but understanding changes in NF1 can help you ask informed questions about care.

In “Let’s Talk Tumors: Understanding and Taking Action,” Dr. Shawn Damodharan and Dr. Nicholas Pytel discuss skin and deep tumors, brain gliomas, cancer risks, warning signs, and care across life stages.

Watch the full presentation from the 2025 NF Midwest iNFo Fair, or use the chapters to find the topics that matter most to you.

▶️ Watch: https://www.youtube.com/

Newly diagnosed with NF—or supporting someone who is? Get a free Packet of iNFo:
https://www.nfmidwest.org/care-programs/newly-diagnosed/get-a-free-packet-of-information/

Share this with someone who could use clear information and a connection to support.

10/29/2026

Two more Power Hours are coming up!

Common Medical Terms on the Patient Journey (English)
November 10 at 7 PM CST

Términos médicos habituales en el proceso asistencial del paciente (Español)
11 de noviembre a las 7 PM CST

Learn more and register: https://www.nfmidwest.org/events/common-medical-terms/
Más información e inscripción: https://www.nfmidwest.org/events/terminos-medicos-habituales/

Please share so more people can find these!
¡Compártanlo para que más personas puedan encontrarlos!

10/28/2026

Did you know you can create a fundraiser on our “Celebrate a Milestone” page? 🎉

If you want to dedicate your special day to NF Midwest, this is the spot! Whether it’s a birthday, anniversary, graduation, or another big day in your life, we’ve made it easy to share your story and spread the word about your fundraiser.

Start yours today: https://www.nfmidwest.org/get-involved/fundraise/celebrate-a-milestone/

10/26/2026

Date change for our first Spanish Power Hour! / ¡Cambio de fecha para nuestra primera «Spanish Power Hour»!

Our Spanish-language Power Hour, Conversaciones constructivas con los profesionales sanitarios (Español) / Productive Conversations with Healthcare Providers (English), presented by Alexion, has moved to November 5th.

Learn more and register at the link. Please share so more people can find this!
¡Por favor compártanlo con quienes puedan beneficiarse!

https://www.nfmidwest.org/events/conversaciones-constructiva/

Esta «Power Hour» estaba prevista inicialmente para el 21 de octubre.

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...