GA - Katherine Thompson

I want to thank everyone for visiting this site to become more educated regarding neurofibromatosis (NF). Just over the past year or so, I have felt led to become involved in helping bring awareness to this condition and raise money for research and ultimately a cure or effective treatment. I have NF type 1 and for most of my life I have talked very little about my condition. I guess I am "coming out of the closet" so to speak. I was diagnosed with NF type 1 at the age of six. I was born with a spot on my left lower leg that the doctors told my parents to keep an eye on. This spot turned into a tumor that continues to grow despite having been debulked several times. The problem with this disease is that existing tumors keep growing and new ones form without any explanation or way to stop it. I also have a large tumor on my right elbow. Additionally, there are hundreds of neurofibromas all over my body. These look like bumps or skin tags.

Neurofibromatosis encompasses a set of distinct disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body.

NF Type 1 occurs in 1 in every 3,000 births. It is also an autosomal dominant genetic disorder which affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sach's combined. Although most cases of NF1 are mild to moderate, NF can lead to disfigurement, blindness, skeletal abnormalities, dermal, brain and spinal tumors, loss of limbs and malignancies. http://www.ctf.org/
 
Thiscondition affects all ages and races. I want to share with you that despite my diagnosis, I have lived a very fulfilling life. Your contribution will help in finding a cure for all the children and adults with NF and for generations to come. Additionally, your generosity will help me to continue to mentor and engage those less strong and fortunate than I am. I am excited to begin this new chapter in my life and warmly thank you for your generosity.

Meet Our R4R NF Heroes

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VA - Cameron Arnette

VA - Cameron Arnette

Cameron is a happy little 5-year-old boy. At such a young age, he is already a car enthusiast. He ha...

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CA - Denelle Pritchard

CA - Denelle Pritchard

My name is Denelle Pritchard and I am 45 years old. I was diagnosed with NF2 at the age of 28. Since...

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IN - Jesse Markland

IN - Jesse Markland

Jesse is 5 years old and has neurofibromatosis (NF1). This means he has multiple café-au-l...

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CA - Madison Branaugh

CA - Madison Branaugh

Neurofibromatosis is no fun. I am so thankful of your support to help us find the cure. I cannot exp...

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FL - Dylan Brain

FL - Dylan Brain

On April 15, 2009, 6:30 pm our lives were changed forever. An MRI showed that our 3 year old son (tw...

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NC - Ethan Wray

NC - Ethan Wray

Our story begins, like so many others, with the news that parents never want to hear. Your chil...

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CA - Andrew Vigil

CA - Andrew Vigil

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

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GA - Delaney Watts

GA - Delaney Watts

I still remember the day we found out Delaney has NF - 1. I think it is one of those memories you w...

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MI - Nicolas Cohoon

MI - Nicolas Cohoon

When Nic was 2 months old I saw these cute little birthmarks, by 4 months I noticed that they were...

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MI - Izzy Mick

MI - Izzy Mick

Izzy has Neurofibromatosis. This disorder can result in tumors to develop anywhere in her bo...

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CA - Brenda McCool

CA - Brenda McCool

Join Brenda Paola McCool in her quest to find a cure for neurofibromatosis (NF). All donations wil...

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NC - Noah Roberts

NC - Noah Roberts

Noah was only five when a CT scan, after an accident, revealed that he had two brain tumors. Noah ha...

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GA - Jocelyn Driscoll

GA - Jocelyn Driscoll

Hi my name is Jocelyn Driscoll. I was diagnosed with Neurofibromatosis Type 1 at age 3. Neurofibroma...

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GA - Katherine Thompson

GA - Katherine Thompson

I want to thank everyone for visiting this site to become more educated regarding neurofibromatos...

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NE - John Schafer

NE - John Schafer

Neurofibromatosis is a genetic disorder that causes tumors to grow on any nerve in your body at anyt...

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OR - Zachary Odegard

OR - Zachary Odegard

I am 15 years old and I was diagnosed with NF 1 when I was 3 years old. Neurofibromatosis is a g...

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SC - Nicholas Biering

SC - Nicholas Biering

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

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