Neurofibromatosis Midwest

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Neurofibromatosis Midwest

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on th

03/16/2026

Living with NF1 can feel isolating, but you don't have to navigate it alone.

We're launching NF1 Peer Conversations, a safe, peer-led space where adults with NF1 can connect, share, and support one another.

📅First session: Tuesday, March 24
🔁Ongoing: Every fourth Tuesday of the month
💻 Online & open to all adults with NF1

Come to talk, come to listen, or just come to be around people who get it. Some sessions will feature expert guests on specific topics, but there's always room for open conversation.

Newly diagnosed? Long-term NF1 warrior? Just looking for connection? This space is for you.

No pressure. No expectations. Just come as you are.

03/14/2026

March 14 is Celebrate Scientists Day.

Behind every discovery, new treatment, and step forward for NF is a scientist asking questions and searching for answers.

Thanks to their research and innovation, we know more about how NF works than ever before, and new treatments continue to emerge with even more on the horizon.

To the scientists dedicated to improving the lives of people with NF, thank you for the time, talent, and determination you bring to this work. Our community is stronger because of you.

03/13/2026

National Write Your Story Day is TOMORROW, March 14, and we can't think of a better way to mark it than by hearing from YOU.

Every NF journey is unique. Every story matters. Whether you're living with NF yourself or loving someone who is, your experience has the power to inspire, comfort, and connect others who may feel alone in their fight.

So we're asking: will you share yours?

Submit via the link or send us a DM right here on Facebook.

Your words could be exactly what someone else needs to hear.

https://www.nfmidwest.org/share-your-story/

03/11/2026

A huge shoutout and THANK YOU to the amazing teams who have already registered for Walk4NF! We are so grateful for your support in the fight against NF.

Meet our registered teams:
4Kate
Audrey's Special Spots Crew
Apostolic NFers
CJ's Dino Rompers
Cole's Crew
Team Donivan
Ellie's Crew
The HappyKampers
Team Haze
Logan's Heroes
Mighty Mavericks
NF Fighters
Strolling for Roland
Three Feathers Strong
Valencia Nelson

Your team could be next! Register today and join the movement.

Sign up at walk4nf.org

03/10/2026

Don't miss out!

Just a reminder that NF Community Conversations is happening this Saturday, March 14, in Lexington, KY and we've kept the registration link open for you!

Come connect, share your perspective, and be part of something meaningful. We would love to see you there.

🔗 Sign up here: https://tinyurl.com/LexingtonNFConversations

See you Saturday!

03/07/2026

What does it take to build community from scratch? For Kristi, it started with one simple decision. She didn't want to travel just to feel understood.

Alongside a fellow NF fighter, she helped make the Columbia Walk for NF a reality. Read her story on the blog and find out how that decision grew into something much bigger for the NF community in Columbia, Missouri.

Kristi's leadership began with a simple desire not to travel for connection. Today, because of her commitment and NF Midwest's partnership, families in Columbia have a walk to call their own.

Will you join them? The Columbia Walk for NF is coming up and there's room for you.

Link: https://www.nfmidwest.org/building-community-in-columbia-kristis-leadership-with-nf-midwest/

03/03/2026

Join us for a morning of learning and sharing at Shriners Children’s Hospital in Lexington, KY, on Saturday, March 14th. Experts from the University of Kentucky, including the team at the NF clinic, will be on hand to share their professional knowledge. Equally important, we will share experiences with each other.

There will be some educational sessions, material to take home, awareness merchandise, and an Ask Me Anything Q&A. The morning will also include a continental breakfast and end with lunch.

Professionals Attending Include: Dr. Donita Lightner, MD – Pediatric Neuro-Oncologist; Dr. Michael Hendricks, MD – Pediatric Neurologist; Kim Osborne – Patient Services; Alyssa Frye, PsyD – Clinical Psychologist, UKY; Catherine Garcia Stangherlin, MD – Adult Neurologist / Neuro-Oncologist.

https://www.nfmidwest.org/event/ky-community-conversation/

03/01/2026

A big thank you to Willow and her family for sharing their story of NF for Rare Disease Month and for mom's sweet message on kindness.

"Be Kind, You don't know what anyone is going through. Everyone is carrying something."

At NF Midwest we carry the NF burden together so that No One Fights Alone, and we share our stories, so that everyone knows our fight.

If you'd like to share your story, please contact us at nfmidwest.org/share-your-story.

02/28/2026

Today, February 28, is Rare Disease Day.

Rare Disease Day is a day to recognize the millions of individuals and families navigating conditions most people have never heard of and to remind them they are not alone.

Today we’re sharing Audrey’s story.

At just a few months old, small café-au-lait spots began to appear. A few turned into many, and routine checkups slowly became something more. With every new appointment came new questions and a family determined to meet each one with love, courage, and hope.

Through it all, Audrey remains unmistakably herself, a bright, joyful 5-year-old who loves to sing at the top of her lungs.

Her story is a reminder that even in the face of uncertainty, resilience grows. Hope finds its way back. And rare families are stronger than they ever imagined.

Read her full story: https://www.nfmidwest.org/rare-but-not-alone-audreys-story/

Join Audrey's Special Spots Crew at the Naperville Walk4NF:
Naperville.walk4nf.org

02/26/2026

Throwback Thursday with a big dose of inspiration 💙💚

We were flipping through the NF Midwest archives and came across a newsletter from 2012—and it really made us smile.

It highlighted so many creative, heartfelt ways families, friends, and supporters shared their support: poker nights, golf outings, garage sales, bowling events, birthday fundraisers, walks, runs, and community nights. Each one reflected the people and neighborhoods behind it.

What we love most is the reminder that there’s never been just one “right” way to help. Our community has always found meaningful ways to show up that fit their lives, their connections, and their creativity.

If you’ve ever been curious about supporting NF Midwest, let this be a little spark of inspiration. Whether an idea feels big or small, traditional or totally unique, we’d be happy to help you shape something that works for you and your community.

Have an idea—or just wondering where to start? Drop a comment or send us a DM. We’d love to talk.

02/24/2026

NF Midwest is on the Hill in DC, advocating for increased NF research—and we’re thrilled to have some familiar faces with us! This year, Garrett and his mom, Peggy, joined the effort. Garrett was part of our Young Leadership Program back in 2019 and has continued to give back as a mentor ever since.

Although Garrett and Peggy are from Illinois, their passion and commitment helped us extend our advocacy to congressional offices in Iowa and Kentucky as well.

If you’re in Iowa, Kentucky, or anywhere else and are interested in learning how to advocate with us—whether in Washington, DC or right in your home state—we’d love to connect. Let us know!

02/23/2026

Camp NF registration is now OPEN!

We’re thrilled to announce that Camp NF is officially open for registration and we cannot wait for another unforgettable summer.

Camp NF is hosted by Brainy Ridge, a nonprofit that provides specialized camp experiences for kids and teens with medical conditions. They create a supportive, inclusive environment where campers can truly be themselves.

This overnight camp in Virginia is an incredible opportunity for campers to:
• Learn new skills
• Build meaningful friendships
• Connect with others who understand
• Grow in confidence
• Have so much fun along the way

It’s more than just camp. It’s a place where lifelong memories are made.

Learn more and register here:
https://www.nfmidwest.org/event/brainy-ridge-camp-nf-2/

Address

473 Dunham Road, Ste 3
Saint Charles, IL
60174

Telephone

+16309453562

Website

http://www.nfmidwest.org/

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