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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

research

NF Midwest Funded Language Study Results Published

Collaborators from the University of Wisconsin – Dept. of Psychology have published a THIRD paper based on cognitive studies of children with NF1 that has been funded by NF Midwest. This article titled Language in young children with neurofibromatosis-1: Relations to functional communication, attention, and social functioning was published Research in Developmental Disabilities, volume 35, Read the Rest…

libby_web

Meet Libby – Groovin’ It 4NF

I met Libby Huffer four years ago at our inaugural Great Steps 4NF walk in Fort Wayne. I found her to be a beautiful and groovy woman…which is appropriate since she has now put together a Groovin’ 4NF concert for August 2nd.

Libby was diagnosed with NF1 at age five and didn’t have many Read the Rest…

Steve R_web

Meet Steve – Doin’ It 4NF

Steve R. was diagnosed with neurofibromatosis type 2 later in life and completely lost his hearing at age 55 after 3 brain surgeries. Through it all he found a renewed sense of purpose along with a strong desire to reach out to others. Supported by his wonderful wife, Diane, the two of them quickly stepped up Read the Rest…

caitlin

Caitlin’s Story

WARNING THIS MAY BE DIFFICULT TO READ.

A few weeks ago we shared the story of Ina, an older woman with NF1 who is a retired attorney. Ina showed that people with neurofibromatosis-1 can lead long rewarding lives. While we wish we could always share only stories of hope, unfortunately NF1 is Read the Rest…

run4nf-01

Great Steps 4NF 5K Run Results

Thanks to all that ran in the 1st annual Great Steps 4NF 5K run. You all did great!  Here are the results:

Name                                                 Bib#                                     Time

Amundson, Ryan                             15                                         26:27

Backes, Joseph                           Read the Rest…