Established in 1982. Improving CARE in six states in the Midwest.
Neurofibromatosis Midwest is dedicated to the increasing number of men, women and children challenged by neurofibromatosis. We’ve been a nonprofit 501(c)3 since 1982, and we are determined to continue our work to educate, comfort, improve clinical care and fund research for treatments and a cure. We are staffed by people with a personal interest in NF, with real experience and a determination and motivation to use precious funds in an efficient manner.
We are dependent on funds raised by special events, foundations and individual donations. Support us in the fight against neurofibromatosis by visiting our Get Involved page.
Our service area includes Illinois, Wisconsin, Indiana, Iowa, Kentucky and the eastern half of Missouri.
NF Midwest is committed to improving the lives of children, adults, and families impacted by neurofibromatosis. Our continued focus and foundation is on Clinics, Awareness, Research, Education and Support in the states of Illinois, Indiana, Iowa, Kentucky, Wisconsin, and the eastern half of Missouri.
NF Midwest C.A.R.E.S.!
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.
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.