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

Providing Support

In the NF Midwest region no one is left to fight alone.

Providing Support and Building Community

NF Midwest is dedicated to ensuring that NO ONE in the Midwest living with the complicated disorders of NF1, NF2 or schwannomatosis FIGHTS ALONE. We have a dedicated social worker for adults with NF and for families. We provide tools to meet others and to build a community of support. We also fund kids to go to camp and provide academic scholarships to adults with NF.

NF Navigator/Support Program

NF Midwest’s NF Navigator program provides the assistance of a dedicated social worker to improve the ability to cope with issues related to NF and to improve the quality of life.

Our NF Navigator/Social Worker services offered to the NF Midwest community include, but are not limited to the following:

Assist in coordinating care
Understanding
Guidance
Reassurance

Navigating public benefits
Help finding a qualified doctor
Treatment options/clinical trial support
Managing mental health

Other Programs of Support

Free Packets of iNFo

NF Midwest provides free packets of information on neurofibromatosis to new families and adults. People can sign-up under contact us to receive a free packet.

Camp New Friends

NF Midwest provides funding for camp tuition and travel for children with NF to attend Camp New Friends.

Scholarships

NF Midwest awards $1000 scholarships to eligible adults with NF or schwannomatosis.

Building Community

NF Midwest provides opportunities for NF adults and families to learn from and share with others.

Local Groups

We work with volunteers to form NF communities for support and to raise awareness through out the Midwest.

Online Community

NF Midwest is very active with the NF community online. We monitor connections carefully and look for opportunities to bring people together.

Events

Various events are put together by NF Midwest and our supporters to bring people together for support, and also for raising awareness and funds.

People Are Talking

NF Midwest is a wonderful resource for us right here. They raise funds for local research clinics. They provide excellent NF informational packets and web based educational programs so people with NF in their lives can learn about the newest medical information and research discoveries about NF. They organize many fun events throughout our area for adults, children, and families to enjoy, to meet others, to share their story, and find support through friendships made. NF Midwest, as a smaller more local foundation, can provide support in a more personal way that is also very important to our well-being and hope.

- Roxanne

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.