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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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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MA - Celia LaBarbera

MA - Celia LaBarbera

Looking at Celia, one only sees a vibrant, happy playful 6-year old girl who is bursting with lif...

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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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NY - Julia Perfetti

NY - Julia Perfetti

Four years ago our life changed drastically when our beautiful ladybug girl was diagnosed with NF. J...

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GA - Jack Burke

GA - Jack Burke

Jack is a kind, energetic, inquisitive, adorable 8-year-old who also has NF. He is a fantastic big b...

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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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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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GA - Katelyn Watkins

GA - Katelyn Watkins

My name is Sara Katelyn Watkins. I go by Katelyn but do have several nicknames that some people call...

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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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NY - Bailey Gribben

NY - Bailey Gribben

Hi I'm Bailey - I'm 13 years old and I have NeuroFibromatosis 2 (NF2) .This is a genetic neu...

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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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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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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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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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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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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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KS - Jeffrey Owen Hanson

KS - Jeffrey Owen Hanson

Jeffrey Owen Hanson is a philanthropic artist from Overland Park, KS. Visually impaired from an op...

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