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

Learning Disabilities Trial

Posted By NF Midwest | On July 1st, 2012

The University of Chicago Neurofibromatosis Program (Dr. Tonsgard), and the NF Center at Washington University, St. Louis (Dr. Gutmann) along with 7 other NF Consortium centers around the U.S. are conducting a study of learning to see if Lovastatin, a conventional cholesterol lowering medicine, might improve learning in children with NF Type 1. This study furthers the work of Dr. Silva whose work on learning in NF mice was partially funded by NF Midwest. Dr. Silva observed that using cholesterol medicine on NF animals normalized learning.
Participants must be between the age of 8 and 16. For more information please contact the University of Chicago at 773-702-6488 or the St. Louis NF Center at 314-632-7379.

Comments (2)

Shane says:

June 28, 2013 at 11:08 pm

I have NF1 but I am 23 years old and would like to particpiate in a study for NF please can you tell me how by contacting me.

Reply
- NF Midwest says:
  
  July 1, 2013 at 9:59 am
  
  The best way is to go to clinicaltrials.gov and search neurofibromatosis. We also have more information and a few studies highlighted in our website at https://www.nfmidwest.org/get-involved/participate-in-research/. You also may want to contact us and provide us with your mailing and email address so that you may be kept up-to-date with other opportunities.
  
  Reply