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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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…

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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…

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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…

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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…

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…

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…

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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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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…

Act Now - Red Button

Letters Needed for New Code for Mass Removal of NF Tumors

We have an URGENT request of anyone who is affected by multiple tumors from neurofibromatosis or has a loved one who is. Some of you may have heard of an “electrodessication” procedure that is performed by Dr. Weinberg in New York and a few plastic surgeons in the US. This procedure is different from Read the Rest…