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Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

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“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
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“..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
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“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
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“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
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Posted By Karissa Haberkamp | On August 30th, 2017

Erin and Jonathan are big on raising awareness for neurofibromatosis and being advocates for NF Midwest. The two have a young son, Cash, with NF. In a video below they discuss more about their son, NF Midwest, and neurofibromatosis. Many may relate to how Erin and Jonathan feel about Cash’s diagnosis and possible future.

The family is truly dedicated to the NF cause. Last year they were instrumental in getting us a grant through the Discount Tire’s “Driven to Care” Program.

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

Dedicated Family

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