Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

What We Do
“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
Get Involved
“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
Learn
“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
Events
View our upcoming events and join us in making NF Midwest great!
News/Blog
“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29

Great Steps 4NF Walks

Everybody needs to have some fun sometime and our Great Steps 4NF Walks are fun ALL the time!

Great Steps 4NF

Join the NF community and participate in a Great Steps 4NF™ Walk! They’re really more like Rallies!

Already signed up?

The goal is to raise funds and awareness while building community and showing our passion for the cause and one another.

Our teams work all year sharing their stories for the cause while raising funds and awareness. To do this most teams create a personal fundraising page and spread the word through social media. Some teams have “do it yourself” events that also raise funds and especially raise awareness because they bring their story out to the public. Learn about DIY events and how you can really step forward for the cause and raise for your Great Steps team.

Great Steps 4NF events exist because of someone like you! Many Great Steps participants travel hundreds of miles to attend a Neurofibromatosis Walk! If you can’t make it, consider holding your own Great Steps 4NF Walk!

FIND A WALK DIY Events HOLD A WALK DONATE

Note: Great Steps 4NF is trademarked and registered to NF Midwest. No use is allowed without the express permission of NF Midwest.

SOME PHOTOS OF FUN FROM GS4NF 2016

People Are Talking

I just had to commend you on an amazing event yesterday. I have to admit, this whole fundraising experience has been extremely emotional for me. I've been focusing on NF and thereby losing sleep worrying about [my daughter's] future way more than I'd like to. To be honest, I was a little worried about attending the walk and getting more upset. I actually had the best time. It was such a fun, positive event. I felt like everyone had so much fun and it was a great thank you to all of our supporters. You all do such incredible work. And the award for top-raising team...I was super excited to win the title and the plaque, I had no idea we'd get a bag full of awesome loot! Thanks so much for everything. A part of me wishes I had still never heard of NF, but since it's in my life to stay, I'm so glad that all of you are too. We are going on vacation next week and I'm taking the rest of the month off from NF, but later in the summer I have a group of amazing moms in my community ready to enlist and help me plan a local fundraiser.

- Great Steps Comments from Jen

Find NF Care

Get the best care! Find an experienced NF doctor/clinic in the NF Midwest region.

Be iNFormed

Knowledge is power! Learn and understand as much as possible about neurofibromatosis.

Community Support

Don’t fight alone! Meet others in the NF community to learn and share experiences.

Donate

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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.