Neurofibromatosis Midwest

06/03/2026

📢 Interested in clinical trials? National Organization for Rare Disorders, Inc. (NORD) is hosting a FREE webinar on June 11 at 2 p.m. ET — "Participating in Clinical Research: What Patients and Families Need to Know."

Learn how trials work, what participation looks like, and where to find support. Great resource for patients and caregivers in the rare disease community!

🔗 https://tinyurl.com/NORDCTWebinar

06/02/2026

A huge THANK YOU to KRCG 13 in Columbia for coming out to film our walk and sharing it with the community! 🙌 Your coverage means the world to us. Awareness and support like this make all the difference. We are so grateful! ❤️

An awareness walk took place in Columbia Saturday that brings atten...

06/02/2026

💙✨ LOOK AT THIS AMAZING TEAM! ✨💙

May may be over, but NF Awareness never stops at NF Midwest! A huge shoutout to the NF Clinic at Children's Wisconsin for going all out for NF Awareness Month! Their RN, Nurse Practitioner, and Genetic Counselor are rocking awareness pins and bracelets on their badges, and it means the world to us! We love seeing our awareness materials being put to good use!

Thank you for standing with the NF community and helping us spread the word. Together, we raise awareness. Together, we make a difference. 💙

05/31/2026

As NF Awareness Month comes to a close, we want to say a heartfelt thank you to everyone who helped us put NF on the map this May. 💙

To those who hung flyers, secured proclamations, shared our facts, left comments, and spread the word — thank you. To those who bravely shared their personal stories — thank you. And to everyone who laced up and walked with us — thank you.

Because of YOU, more people know NF today than they did on May 1st. The month may be ending, but our work is not. NF Awareness doesn't stop at May 31st, and neither do we.

05/31/2026

As NF Awareness Month comes to a close, we’re reflecting on one of the most common and challenging experiences across all forms of NF, chronic pain. 💙

As highlighted throughout this month, pain can stem from many causes and is often debilitating and life altering. It’s also something deeply personal and not always visible or understood unless it’s lived.

Together, we stand as a community, raising awareness, supporting one another, and continuing to push for greater understanding of NF and its impact.

05/31/2026

We’re proud to continue putting NF on the map with the incredible efforts of the Woods family, who helped secure multiple proclamations recognizing NF Awareness Month. 💙

From meeting with the Mayor of St. Louis to a special moment at the Lt. Governor’s desk, Austin and his family are making a powerful impact by raising awareness and sharing their story. These moments highlight the importance of advocacy at every level and the difference one family can make.

Thank you to David, Michelle, Austin, and Dallas for your dedication to the NF community. We also celebrate Paisley, who is not pictured, as part of this amazing family helping put NF on the map across Missouri.

05/30/2026

Unidentified Bright Objects (UBOs) are commonly seen on MRI scans in children with NF1. While not tumors or malignant, they are thought to represent changes in brain white matter, though their exact nature is still not fully understood. Their presence is often associated with NF1 features but is not part of the diagnostic criteria. Many UBOs fade after adolescence, though some can remain.

05/29/2026

"NF doesn't play favorites." Kristi Saylor and Christina Thomas have been building a community around neurofibromatosis awareness in Columbia, MO and this Saturday, they're walking for it. Check out this great feature on two incredible women doing important work. 💙

Walk4NF will be held Saturday morning in Stephens Lake Park. The fundraiser began in Missouri in 2019.

05/29/2026

Know your risks with NF1. Individuals with NF1 have an increased risk for several types of cancer, including those listed, though this is not a complete list. 💙

Help spread awareness by sharing this and educating others this NF Awareness Month.

05/29/2026

Only a few days left of NF Awareness Month as we begin to wind down. 💙

NF2-SWN can lead to multiple complex complications, including tumors like ependymomas, as well as nerve-related conditions such as neuropathy and radiculopathy.