CA - Raymond Thomas PDF Print E-mail

Raymond was diagnosed with NF1 at about 2 years old. Since then he has begun to work with a speech therapist and developed a few tumors (they have not caused complications). We have been very lucky so far and with your help we can work to find treatments and hopefully a cure. Neurofibromatosis (commonly abbreviated NF) is a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues. The disorder affects all neural crest cells (Schwann cells, melanocytes, endoneurial fibroblasts). Cellular elements from these cell types proliferate excessively throughout the body forming tumors and the melanocytes function abnormally resulting in disordered skin pigmentation. The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems. Any donation is appreciated.

 

Our NF Heroes

SC - Nicholas Biering

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If you are reading this page, you probably already know who I am, but just in case…. My name is Nicholas Bier...

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VA - Jamie Yowell

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My name is Jamie and I am 14 years old. I have NF 1. I have a large neurofibroma wrapped around my airway that is com...

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CO - Sawyer Devlin Ray

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Our little man, Sawyer, was officially diagnosed with NF1 when he was 8 months old, though we had been pretty sure of th...

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NY - Jonathon White

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 My name is Jonathon White, I am 12 years old and I have neurofibromatosis (NF). I live in Staten Island, New Yo...

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SD - Auston Ehrmantraut

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Auston Ehrmantraut was diagnosed with NF1 shortly after birth. Since he was a baby, he's been doctoring at Mayo Clin...

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IN - Jesse Markland

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Jesse is 5 years old and has neurofibromatosis (NF1). This means he has multiple café-au-lait spots, many smal...

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IL - Tyler Neppl

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Tyler was diagnosed with neurofibromatosis or NF at a very young age. He has been affected by tumor growth since he wa...

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WA - Xavier Compo

My son was just recently diagnosed with NF1, for two years we have been trying to figure out what has been going on w...

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CA - Andrew Vigil

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Hi, my name is Andrew and I was diagnosed with NF1 when I was 5 years old. I am now 10 years old and NF has affected me ...

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NC - Ethan Wray

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Our story begins, like so many others, with the news that parents never want to hear. Your child is sick, but not j...

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NY - Kevin Martin

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My name is Kevin Martin. I am 12 years old. When I was only a few weeks old, I developed café-au-lait spots on my body. ...

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NY - Julia Perfetti

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Four years ago our life changed drastically when our beautiful ladybug girl was diagnosed with NF. Julia was just a tiny...

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