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

be iNFormed – Transitioning to Adult Care

Posted By NF Midwest | On February 24th, 2015

At our annual symposium on October 25, 2014 Dr. Parag Shah of Lurie Children’s Hospital and LaRabida Children’s Hospital spoke on Transitioning to Adult Care. Because neurofibromatosis is a lifelong and complicated disorder this is an especially important topic. It is critical that as children with NF become adults they are able to take responsibility for their care and understand all that it entails.

We have provided a somewhat rough, but readable transcript from Dr. Shah’s presentation as well as his slides.

Transcript

Slides

Be sure to check out other resources for Neurofibromatosis Type 1, Neurofibromatosis Type 2 or Schwannomatosis.