Neurofibromatosis Midwest

42 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

NF Registry

Posted By NF Midwest | On July 5th, 2012

If you or your child has been diagnosed with neurofibromatosis (NF) please join the NF Registry today. The key to treatments lies within you – researchers can’t deliver treatments without committed volunteers.

Sponsored by the Children’s Tumor Foundation, the NF Registry’s mission is to identify people with NF who are interested in participating in clinical trials, as well as determining the commonality of specific characteristics of neurofibromatosis. The NF Registry is committed to secure methodologies and pioneering research that will lead to improving the health and well-being of individuals and families affected by NF.

Even if you don’t want to participate in clinical trials, sharing your information on this registry will help advance our knowledge of neurofibromatosis.

NF REGISTRY

Comments (1)

Barbara Schramm says:

March 28, 2014 at 2:47 pm

I was suspected of NF at around 4 years of age. I have CP. I could not walk. I spent the first six years of my life in braces or casts. At six the surgeries started. I had 26 by the age of 12. They amputated at 12 1/2. I also have NF1. Have had several tumors removed from the skin as well as internally. My daughter was diagnosed with NF at 11 years. She passed from MPNST/lung cancer at 29.

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