43 Years of Care and Ensuring No One Fights Alone!

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
“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
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
Support

Create Your Own Fundraising Page

Tell your story and allow donations for your event or team!

Using Our Fundraising Platform

We recommend using the tools provided by our fundraising platform to create your own page to tell your story and/or raise funds for the NF cause. With our tools, you can use your words, photos and video to share why neurofibromatosis matters to you. You can then share the link with your network of family, friends and colleagues. Track donations, send invitations and emails about events!

Creating a Page for Great Steps

Once you register for a walk at www.walk4nf.org the system will create a page for you and/or your team. If you’d like to hold an event or create a challenge to raise for your team you may simply want to change the page to provide information about your event or challenge.

Creating Your Own Event or Campaign

You can use our fundraising platform to create your own event or campaign to support NF Midwest. For instance, you may want to have people donate to NF Midwest in honor of a birthday, wedding, anniversary or other special event; or you may want to shave your head or jump out of plane if your friends will donate to your goal; or you may want to collect donations as part of an event you are holding (like a trivia nite or bowling party).

If you are creating an event and need to take registrations, please let us know. We may be able to help.

To create your page, go to Create Your Own Fundraiser page and click START A FUNDRAISER.

You will have to create an account and follow the instructions.

Creating a Page to Tell Your Story

You can create a page either as part of your Walk4NF efforts and share your story. If you aren’t able to participate in a walk you can create a page by following the instructions above under Creating Your Own Event or Campaign. You can then share that page through social media and email. The page will also allow people to make donations to NF Midwest and the neurofibromatosis cause. If you’d just like to share your story will us please go here.

People Are Talking

Today I had the chance to get together with a friend that I haven't seen in quite some time, and we managed to talk for three hours about our boys, ages 9 and 12, both with NF1. On my way home, I thought about how blessed I have been and the blessing that has been NF Midwest. My family's lives have been tremendously impacted by the NF Midwest family. That's truly what they have become to us-family. Earlier this spring, we had the opportunity to go to the NF Midwest office in St. Charles, IL. I'm not quite sure what I expected, but there were only three people running this organization that serves NF families in six states! Little did I realize that this visit would lead to the biggest adventure in all of my son 9 years, as he got to go to NF camp in Virginia. Not a day goes by since he came home that camp isn't mentioned. Even more remarkable than that is that those campers’ experiences were made possible by people who just want to make a difference. Making positive differences in the lives of people with NF is ultimately what NF Midwest represents to me. Of course, their contributions to research are extraordinary, and our family has seen first-hand how wonderful camp can be, but I am just as moved when I see a simple message from the staff at NF Midwest offering thoughts and support for someone who is scared and anxious about a test result. The uncertainties of NF can be too much for people to bear and can leave them feeling powerless (yes, I am speaking from personal experience). Our participation in NF Midwest has helped us take some of that power back, and has given us hope.

- NFmom

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

© 2025 Neurofibromatosis Midwest - non profit 501(c)(t3). Site Map - Privacy Policy
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.