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

Special Neurofibromatosis Blood Draw

Posted By NF Midwest | On October 31st, 2012

NF Midwest Symposium Attendees Give Blood for Research.

Those who attended Neurofibromatosis Midwest’s Symposium on Oct. 13^th had a rare opportunity to participate in an onsite dermal fibroma study. People with neurofibromatosis type 1 with a very low or a very high neurofibroma tumor counts were able to give blood for a study which is looking for genetic modifiers that might provide insight as to why some people have many or few cutaneous neurofibromas. Our participants were eager and enthusiastic to have this chance to be part of research and to make a difference. Neurofibromatosis Midwest is pleased to help fund part this study in conjunction with Neurofibromatosis Northeast and is very grateful to Dr. Fawn Leigh of Harvard Medical School and Massachusetts General Hospital for her work and dedication to our cause.