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

Video – Tumor Suppressor Research

Posted By NF Midwest | On July 19th, 2013

A video released in January 2013 by the Congressionally Directed Medical Research Program (CDRMP) highlights the work of Dr. Karen Cichowski, Brigham and Women’s Hospital, on NF1 tumor suppression. Dr. Cichowski’s work was funded by the Neurofibromatosis Research Program which is a program of the CDRMP whose funds and mission are managed by the Department of Defense.

NF Midwest annually helps fund an advocacy campaign to lobby for the continuation and increase of federal funds for this program. We also urge people to contact their congressman and take a contingent of people to walk the “hill” in Washington DC every year to personally visit the offices of our congressional representatives from the Midwest to educate them about NF and NF research.

Watch the video. It is very educational and interesting.

Comments (1)

Connie Tomlinson says:

March 13, 2015 at 2:02 pm

Thank you for a very interesting video. I have numerous tumors all over my body, I am currently 49 yrs old and it seems like the older I get the more of them I get. It is kinda scary knowing that some of them could turn cancerous. I have had several removed because they were hurting especiallywhen touched, or that they were growing. It would be nice to have something that would just make them go away! Thank you for your research in this area

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