News/Blog - Neurofibromatosis Midwest

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Marissa- A Face of NF

Posted By Andrea Miller | On May 20th, 2019

Hi! I was diagnosed with neurofibromatosis type 1 when I was 3 years-old, and I’m the only one in my…

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Collin- A Face of NF

Posted By Andrea Miller | On May 10th, 2019

Hi, my name is Jean. My son, Collin, was diagnosed with NF1 at the age of 1. He was a…

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Jean – A Face of NF

Posted By Diana Haberkamp | On May 17th, 2019

I have NF1. I was born 1970 as an identical twin. My mom had two boys before us and…

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Danielle & Bernadette – A Face of NF

Posted By Andrea Miller | On May 16th, 2019

Growing up I always knew I was different. I had spots all over my body. I actually thought for…

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Tim – A Face of NF

Posted By Diana Haberkamp | On May 14th, 2019

I am 64 years old with no prior neurofibromatosis family history and none of my 6 siblings have NF, making…

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Eric & Kai – A Face of NF

Posted By Andrea Miller | On May 14th, 2019

I have NF type 1. For the most part, my symptoms have been mild, but the most significant challenges I’ve…

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Ana – A Face of NF

Posted By Diana Haberkamp | On May 13th, 2019

Ana is 10 years old. She was diagnosed with neurofibromatosis type 2 when she was seven. Her genetic disorder was…

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Maverick – A Face of NF

Posted By Andrea Miller | On May 12th, 2019

Maverick is the first in his family to be diagnosed with NF1. He started showing symptoms at 2 months old….

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Tori – A Face of NF

Posted By Diana Haberkamp | On June 8th, 2018

I inherited NF1 from my father. I was diagnosed shortly after my birth. The doctor noticed that I had flat,…

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Karissa- A Face of NF

Posted By NF Midwest | On May 10th, 2019

Hi I’m Karissa, I’m 27 and I have NF1. My story may be a little long, but sometimes that’s the…

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Conor- A Face of NF

Posted By Andrea Miller | On May 9th, 2019

My little guy’s name is Conor and he is 1 year-old and has been diagnosed with NF Type 1. Conor’s…

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Rory – A Face of NF

Posted By Diana Haberkamp | On May 7th, 2019

Aurorah (Rory), now age 9, was diagnosed with neurofibromatosis type 1 shortly after her sixth birthday. She was born with…

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Benjamin – A Face of NF

Posted By NF Midwest | On May 7th, 2019

Our three-year-old son, Benjamin, was diagnosed with Neurofibromatosis Type 1 one year ago due to multiple cafe-au-lait spots (birthmarks) and…

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Joel – A Face of NF

Posted By Andrea Miller | On May 6th, 2019

This is my son Joel. He was born with neurofibromatosis type 1. Neurofibromatosis (NF) is a genetic disorder of the…

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Jackson – A Face of NF

Posted By NF Midwest | On May 5th, 2019

Hi! My name is Jackson and I’m 10 years old!! I was diagnosed with NF1 at 18 months old. It’s…

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Eli – A Face of NF

Posted By NF Midwest | On May 4th, 2019

When Eli was three years old, he was diagnosed with neurofibromatosis type 1, something we had never heard of before….

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Wyatt – A Face of NF

Posted By NF Midwest | On May 3rd, 2019

Wyatt was diagnosed with NF type 1 when he was 2 years old. He will be turning 13 years old…

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Chris Plus Morgan – A Face of NF

Posted By NF Midwest | On May 2nd, 2019

May is NF Awareness month. This year, to grow awareness, we are going to be sharing stories of how this…

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Katy – A Face of NF

Posted By NF Midwest | On May 1st, 2019

Katherine (or Katy) is 5 years old and was diagnosed with NF1 in October of 2018. Our first sign of…

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Spring 2019 Neurofibromatosis Midwest Newsletter

Posted By NF Midwest | On April 23rd, 2019

Check out our Spring 2019 NF Midwest Newsletter! The highlights of this issue include… Page 1 Information on the new…

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New Care Guidelines for Children with NF1

Posted By NF Midwest | On April 23rd, 2019

The American Academy of Pediatrics has published an updated clinical guideline on the Health Supervision for Children With Neurofibromatosis Type…

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Protected: Rick – A Face of NF

Posted By Diana Haberkamp | On May 19th, 2019

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