Neurofibromatosis (NF) Midwest

NF Midwest improves the lives of people with NF by focusing on CARE and building community. We work to improve clinics and to help people with NF get to clinics. We raise awareness through the media and through events. We fund some research, but mainly support lobbying efforts for national research funds. We especially focus on providing education and support to families and individuals with NF.

We hold events to raise funds to help people with NF and also to build an NF community of support and to raise awareness. We also provide educational opportunites such as seminars and webinars, educational material and an annual symposium.

NF Midwest is an organization that has existed since 1982 to improve the lives of people with neurofibromatosis (NF). NF is a devastating and complicated disorder that not only causes tumors to grow on the nerves anywhere in or on the body, but can also cause a huge list of other issues including, but not limited to, learning disabilities, bony abnormalities, seizures, blindness, hearing loss, cancer and death.

Our focus is on C.A.R.E. which includes Clinics, Awareness, Research, Education and Support in the states of Illinois, Indiana, Iowa, Kentucky, Wisconsin, and the eastern half of Missouri.

We were founded in the Geneva area and are now headquartered in St. Charles. Most of the people we serve can currently be found in the Chicago area.