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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…

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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…

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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…

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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…

Ina Marks

Meet Ina – An Attorney with NF

Both Sides of NF

My name is Ina. I am 65 and was born with NF. Because my case is “mild” it was totally missed until I was almost 50.  My physical problems are minimal just freckles “cals” I had since birth and bumps that began during my pregnancy before I was diagnosed.

More Read the Rest…

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Monthly Giving: Keep Hope in Motion

Join the many others who are participating in our monthly giving circle by signing up for automatic monthly donations of $10, $20, $50 or $100.

A monthly donation is a painless, effortless way to support neurofibromatosis and NF Midwest. Your monthly generosity gives NF Midwest a reliable income stream so that we can focus more Read the Rest…

university of wisconsin

University of Wisconsin Research Collaboration

We are excited and proud to announce our collaboration with the University of Wisconsin-Madison, Biotechnology Center. The UW Biotechnology Center and NF Midwest are currently in the process of establishing new NF research at the University of Wisconsin. This partnership marks a strong step forward in bringing new research techniques and NF awareness to Read the Rest…

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NF Midwest 2013 Annual Review

A small but mighty and well established organization – NF Midwest is here in the regional community for children and adults with NF and their extended families. And we’ve been here for over 30 years fighting a battle that personally affects us all.

Today we are proud to release our 2013 Annual Review. We Read the Rest…

alexander asamoah

New Neurofibromatosis Clinic in Louisville

NF Midwest is excited to have another NF clinic to add to the region. This one is through the University of Louisville. This clinic will see children AND adults. We look forward to working with and supporting the Louisville NF Clinic. You can help support it by fundraising and also by using it and giving us Read the Rest…

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Neurofibromatosis Champions Challenge

We wrote this week about all the ways NF Champions can forward neurofibromatosis through public speaking, media connections, local events and the internet. Now we hope that everyone will think about how they can step up and be an NF Champion to raise awareness and funds for research and programs of education and care.

We Read the Rest…

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Neurofibromatosis Champions Speak Out!

Almost every week we have NF Champions stepping forward and raising neurofibromatosis awareness and asking for donations to NF Midwest. These are ordinary people choosing to do extraordinary things for the NF cause.

Often they raise awareness one group at a time by reaching out and speaking up. They include people like Patrick Z who regularly Read the Rest…

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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…