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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “Stories” Category

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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…

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…

Ina Marks

Meet Ina – An Attorney with NF

Ina Marks

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 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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Two Great Stories For Neurofibromatosis

Raising awareness and funds is not only a year long, but life long battle. There are a lot of people who open their lives to share their stories about neurofibromatosis in order to do this.

Two such people have created pages on our Firstgiving site that we’d like to share now. Their stories are both Read the Rest…

Neurofibromatosis Fighter - Training2Live

Video – Our 2013 Symposium Inspirational Speaker

We are very excited to have a special speaker scheduled for 2013 NF Family Symposium coming up on Saturday, October 12th. DeJuan Evans has NF1 and is an MPNST survivor. More importantly, he is an NF Hero with muscular arms the size of large tree trunks. He not only proves that MPNST can be fought, Read the Rest…