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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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…

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You Can Win A Chevy Cruze and Help Neurofibromatosis!

Here’s an event you can participate in from your couch and possibly win a car! For John Deere’s Birdies for Charity all you need to do is make a pledge and guess at the number of birdies that will be made during the John Deere Classic.

A 2014 Chevy Cruze will be awarded to one person who 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…

Tim's Gang at our Inaugural Great Steps 4NF walk in Naperville, IL.

Great Steps Origins (Throwback Thursday)

It’s “Throwback Thursday” and Great Steps 4NF season! So today we honor those who had the Great Steps 4NF vision 13 years ago with the first walk in Naperville, IL. Many of those original teams still join us today and new walks and new teams come on every year. Thanks to the desire, determination and 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…

Cares for web

Same Mission: New Way of Saying It

NF Midwest C.A.R.E.S.

If you read our spring 2014 newsletter or our annual review you may have noticed that we have rewritten our mission statement. However, though the text has changed our mission remains essentially the same as it has been for 30 years. We feel this new mission statement clarifies what we do, why 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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Help Research: Stay in Touch With Your NF Clinic

It is VERY important to visit your “NF clinic” regularly, but if  can’t and it has been a while, PLEASE try to provide that clinic an update of your condition, especially if there have been changes in your health. Having an accurate database of how individuals with NF are affected is important for knowledge 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…

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Adaptive Behavior in Young Children with Neurofibromatosis 1

NF Midwest has been funding cognitive studies of young children with NF for the last two years. These studies have been lead by Bonnie Klein-Tasman at the University of Wisconsin-Milwaukee. This past fall we saw the results of these studies with the publications of two journal articles by Dr. Klein-Tasman and Read the Rest…

NF Midwest Lobbying 2013

The “R” in C.A.R.E.S stands for RESEARCH!

Next week on February 10th and 11th we are going to literally “walk the talk”  and go office to office on Capitol Hill explaining the importance of NF funding to our congressional representatives. As a group of NF activists with the NF Network, we will for the 18th year in a row, take the fight 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…

camp swimming

Camp New Friends 2014

Having one of the neurofibromatoses (NF1, NF2, Schwannomatosis) is a lifelong challenge. Building a foundation of strength and knowledge; and developing a circle of friends that understand and will always be there, can make a lifelong difference.

Camp New Friends, run by Brainy Camps, is an opportunity for children (ages 7 to 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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“D” Inspires at the Neurofibromatosis Midwest 2013 Symposium

DeJuan “D” Evans brought tears of inspiration and steely determination to the audience at the 22nd NF Midwest Symposium on Saturday, October 12, 2013. Diagnosed with a malignant peripheral nerve sheath tumor (MPNST) in 2012, “D” under went treatment and also had over 200 tumors biopsied. Today he is cancer free. He credits 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…