News/Blog

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Evita – A Face of NF

Posted By Diana Haberkamp | On May 31st, 2019

My name is Evita Ali and I have NF1. I was diagnosed with neurofibromatosis when I was 30 years of…

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New Website Connects NF Patients with Doctors

Posted By Diana Haberkamp | On May 30th, 2019

NF Collective Launches New Website to Connect NF Patients with Doctors The NF Collective, a group of organizations dedicated to…

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Shad – A Face of NF

Posted By NF Midwest | On May 29th, 2019

I joined the Army at 19 years old. I did all the training and arrived at my duty station. In…

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Silas – A Face of NF

Posted By Andrea Miller | On May 29th, 2019

My sixteen-year-old son began getting café au lait spots at two months old. Our pediatrician at the time gave us…

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Sarah- A Face of NF

Posted By NF Midwest | On May 27th, 2019

My STRONG and POSITIVE Sarah was born with NF1. Sarah has had 12 surgeries, 14 chemo sessions, 58 MRI’s, and…

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RJ – A Face of NF

Posted By NF Midwest | On May 26th, 2019

We had moved from a quiet neighborhood to a go, go, go city which meant switching all our providers. When…

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Ben – A Face of NF

Posted By NF Midwest | On May 26th, 2019

My name is Ben. I’m graduating high school next week and heading to college this fall. Neurofibromatosis type 1 was…

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Geri – A Face of NF

Posted By NF Midwest | On May 25th, 2019

I was diagnosed with neurofibromatosis type one at birth. It was caused by spontaneous mutation. I was born with glaucoma…

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Steve – A Face of NF

Posted By NF Midwest | On May 23rd, 2019

I am 67 years old and I have NF2. When I was 45, I had my first acoustic neuroma (now…

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Taylor – A Face of NF

Posted By Diana Haberkamp | On May 22nd, 2019

I have been running competitively for almost 2 years and love it. It helps me relax, great stress reliever gave…

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