43 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

2022 Young Adult Leadership Program

Applications being accepted.

2024 NF Midwest’s Young Adult Leadership Program

Posted By NF Midwest | On September 7th, 2023

The NF Midwest Young Adult Leadership Program is a transformative experience for individuals passionate about creating change. This program equips young adults with the tools and knowledge needed to advocate for themselves and NF. By joining, participants gain access to a supportive community of like-minded individuals, all dedicated to making a difference. One of the program’s most exciting aspects is the opportunity to go to Washington DC. Participants will gain leadership skills by taking part in a 5-day workshop that will be led by leadership experts and mentors. Participants will then have the chance to meet with Congressional leaders to provide education on NF and share personal stories to emphasize the importance of funding NF research. Advocacy efforts like those of the Young Adult Leadership Program have tangible results. They help secure funding for research, raise awareness about NF, and improve the lives of those living with this condition. By participating in this program, participants can become part of a larger movement dedicated to making a change. Together, we can make a lasting difference in the world of NF.

BECOME A LEADER TODAY.

The 2024 program will be held January 8-12 in Washington D.C.

Scholarships are available to qualified applicants.

Application deadline is October 1, 2023.

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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.