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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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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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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FL - Lilly Ann Brooks

FL - Lilly Ann Brooks

Thank you for supporting the Children's Tumor Foundation. Your contribution is greatly appreciated...

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UT - Wyatt Enman

UT - Wyatt Enman

My name is Wyatt and I have a disease called neurofibromatosis (NF1). This is a disease that effects...

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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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CA - Blake Robinson

CA - Blake Robinson

For the first year of his life, everything seemed normal. Blake was born at term via c-section, only...

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MO - Nicole Riley

MO - Nicole Riley

Nicole was diagnosed with a large Plexiform tumor in her lower abdomen and legs on her first birthda...

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NV - Taylor & Kirsten Halbert

NV - Taylor & Kirsten Halbert

Taylor and Kirsten are 7 year old identical twins with a condition called neurofibromatosis. They we...

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CA - Dakota Anderson

CA - Dakota Anderson

Dakota was suspected of having NF1 at 2 months old when the doctor noticed her cafe au lait spots. S...

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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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AZ - Kyle Oden

AZ - Kyle Oden

Kyle was first diagnosed with NF1 in February of 2009. We took him to the eye doctor because we thou...

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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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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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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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IL - Cole Rutter

IL - Cole Rutter

My name is Cole Rutter. I am 12 years old. When I was only a few weeks old, I developed café...

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MA - Dylan Thompson

MA - Dylan Thompson

Dylan is 10 years old and has neurofibromatosis. He has suffered significant visual losses such as b...

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MA - Molly McBryan

MA - Molly McBryan

Molly was diagnosed with NF1 at 18 months. Doctors have found a tumor on Molly's optic nerve, a si...

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