Making sure those with NF get the best care is our top priority and as such we work to identify and support clinics in our region.
We now have 12 clinics in our six state region of Illinois, Indiana, Iowa, Wisconsin, Kentucky and east Missouri. Every state now has at least one clinic seeing adults and children. NF Midwest works closely with these clinics to ensure that the NF community gets the best care.
Finding the right doctor to oversee the care of your neurofibromatosis is the most important thing you can do for you or your loved one. The neurofibromatoses are very complicated disorders that require many different types of specialists. To oversee care of the patient with neurofibromatosis 1, 2 or schwannomatosis the best approach is to have one doctor or clinical team who are VERY experienced in NF and who have specialists that they regularly refer NF patients to.
NF Midwest is working on new programs to directly support clinics and those who go to NF clinics in our region. Currently we provide educational material to clinics and work as the voice of the NF community to the clinics.
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.