Our NF Heroes

Matt Camacho NF ChampionNF-Hero-Alex-Owens

The Children's Tumor Foundation is inspired and encouraged by those that face neurofibromatosis with resilience, fortitude, and bravery every day. In honor of their strength and courage, the Foundation refers to people who live with this disorder as either "NF Heroes" or "NF Champions."

Please click on the photos to read their stories and view their profiles.

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To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at mvetting@ctf.org

Our NF Heroes

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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 me. They are Kate-Kate, Smiley and Snickers. My parents are divorced and I live with my Dad (Randy)...

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Dallas Henderson

Dallas Henderson

Dallas was born at East Alabama Medical center in Opelika, Ala., and appeared to be a healthy baby boy. Over the first year of life, Dallas thrived and grew, until one day while drinking from his b...

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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 genetic disorder that affects the central nervous system causing tumors to grow on or in the body. NF...

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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 neurological disorder that causes tumors to grow on the nerves of my brain & spinal cord .I am a re...

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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 significant pectus excavatum (which causes her chest wall to grow inward pressing on her heart and lun...

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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 anytime. It affects 1 in 3,000 births and can show up in any family at any time. Every person with NF li...

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MI - Izzy Mick

MI - Izzy Mick

Izzy has Neurofibromatosis. This disorder can result in tumors to develop anywhere in her body, at any time. It affects 1 in every 3,000 people and is more prevalent than Cystic Fibrosis, here...

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Erin Earle

Erin was diagnosed with neurofibromatosis type 2 (NF2) sixteen years ago and has dealt with many changes as a result.

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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-lait spots, many small tumors, at least 1 more complex tumor, a brain tumor, low muscle tone, nerve p...

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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 birthday. There is the good, the bad and the ugly. The plexi keeps her from being able to walk on her own. ...

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PA - Michael Zazula

PA - Michael Zazula

Welcome to Michael's Racing for Research page. The past year has been full of challenges, a test of faith and fortitude but most of all a year of HOPE! With the energy and ambition that so many people...

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Candice Patterson

Candice Patterson

Candice Patterson has endured 19 surgeries because of NF which has caused tumors on her optic nerves and sinuses. In addition, she has had facial reconstruction and has been temporarily blind. Six ...

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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 (two at that time) Dylan was diagnosed with neurofibromatosis. Dylan has tumors on his brainstem and sp...

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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 child is sick, but not just with a cold or the flu. Those are managable with some warm soup and lots of ...

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Savannah Grace “Gigi” Kast

Savannah Grace “Gigi” Kast

Gigi will do just about anything for a bag of Skittles. She loves sugary treats. She likes things that are pink and she enjoys playing in dress up clothes. But Gigi's diagnosis of Neurofibromat...

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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 blindness in his right eye as well as lack of depth perception, binocular, and peripheral vision. He ...

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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 NF has affected me in many ways.   I have tumors on my optic nerves, brain stem and now on my upp...

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Anne Shigley

Anne Shigley

Anne is a committed distance runner from Atlanta, Ga. who lost her hearing due to NF2 during her senior year of high school. Currently Anne is a student at Rochester (NY) Institute of Technology, w...

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Noah Tyrybon

Noah Tyrybon

At Noah’s kindergarten graduation, when the kids were asked what they want to be when they grow up, Noah, among all the policemen, firefighters, and teachers was the lone "calculator.&r...

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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. Neurofibromatosis is a genetic disease that is a spontaneous mutation or it is passed down by a parent. It cause...

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Noah Lease

Noah Lease

Noah is a son, brother, grandson, neighbor and friend. "We’ve worried for him, prayed for him, laughed with him, read to him, held his hand and cried for him," said Brian, Noah'...

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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-au-lait spots all over my body. They looked just like birth marks, so my parents were not too worried. Bu...

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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 brother, and loves playing with Luke, his cousins and his friends. He makes his parents so proud ever...

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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 multiplying. At Nic's 4 month pediatrician appointment was the first time I heard the words Cafe' A...

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IL - Tyler Neppl

IL - Tyler Neppl

Tyler was diagnosed with neurofibromatosis or NF at a very young age. He has been affected by tumor growth since he was 3 months old. As you can see in the picture one tumor affects his sight in his...

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Athlete of the Month Spotlight

Athlete of the Month Spotlight

                                     Congratulations to Gregg Donohue, our May NF Endurance ath...

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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 that time I have had 3 brain surgeries. The most common problem people with NF2 have is deafness an...

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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. Julia was just a tiny girl, about to turn 4 years old. The facts of NF- its progressive, unpredictabl...

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Florence McCarthy

Florence McCarthy

They say, "what happens in Vegas, stays in Vegas", and I guess that is true on many levels, however, in this case, I would like to make an exception. Last weekend, my husband, John and I t...

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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. Your interest in Lilly Ann’s cause - finding a cure to neurofibromatosis, or NF, - is vital. We p...

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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 life! Her family's pride and joy. No one would fathom what lies within her... what she battles dail...

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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 name is Nicholas Biering. I am 12 years old and attend St. John's Christian Academy and I am in t...

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Carson Rowe

Carson Rowe

      Baxter Rowe and his wife Marci first noticed the brown spots on Carson in 2008. “We thought they were birth marks or freckles but my wife noticed that they got big...

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CA - Brandon Tibbets

CA - Brandon Tibbets

Brandon Tibbets was born with NF 1. He has a bone deformity in his leg due to his NF. His bone fractured on its own when he started putting weight on his leg. The bone didn't heal on its own so surger...

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Perrie Smith

Perrie Smith

Perrie Smith lives with more than 50 birthmarks all over her body. The biggest one is on her right leg; she calls it the birthmark the size of   Alabama. When Perrie was younger, sh...

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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 will fund the Children's Tumor Foundation's research programs. Together we can help the millions worldw...

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NY - Kevin Martin

NY - Kevin Martin

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. They looked just like birth marks, so my parents were not too worried. But two y...

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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 express to you in words how much your support means to me (since I'm only 3) but I can give you a big h...

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GA - Katherine Thompson

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 awarenes...

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Corey Wexler

Corey Wexler

On April 24th, 2005 I will run my first 1/2 marathon! On January 1st, I started a 16 week training program, running 5 days a week leading up to the main event. This is my first time running an event o...

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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 has attended the Daytona 24 Hours Rolex race three times, and is very excited about seeing "his" racec...

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NF Hero

NF Hero

December 2008 Celia Running a 26-mile marathon for the six members of the Lemon Drop X team takes stamina, determination, and guts. But deciding to train for a marathon after running for less ...

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Kylie Earle

Kylie Earle

Kylie Earle was diagnosed with NF 1 when she was two months old. She had congential glaucoma and underwent five eye surgeries. Most recently, she had enucleation (removal) of her left eye. She has a p...

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About NF Heroes

About NF Heroes

RACING FOR A REASON.  NF Heroes — children and adults from around the country who every day live with the challenges of NF — are the heart of the Racing4Research program. Our Heroes, along with...

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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 had surgery within several weeks to successfully remove the two tumors. It was not until several month...

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NF Hero Submission Success

Thank you for your NF Hero Submission!   Click here to return to the NF Endurance home page. 

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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 wish you could forget. Unfortunately, that won't happen, so I face each day with the hope that Delane...

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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 thought he had a lazy eye. But when the doctor dilated and looked in his eye he noticed swelling, pressu...

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Braeden and Bronson Steiner

Braeden and Bronson Steiner

Braeden and Bronson Steiner both have NF1.Braedan was diagnosed at 16 months with an optic glioma brain tumor. At about two years old, he was diagnosed with congenital pseudoarthrosis of the tibia as ...

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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. She was officially diagnosed at 9 months old by a blood test. She is now 5 years old and in Kindergar...

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Kate Trommer

Kate Trommer

Kate was diagnosed with NF when she was two years old.  Families and friends touched by NF know the uncertainty that goes along with this diagnosis.  "It becomes an emotional roller coaste...

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VA - Evan Perdew

VA - Evan Perdew

Evan was diagnosed with NF when he was 3 months old. In 2009, doctors found a large plexiform neurofibroma in his right shoulder that cannot be removed. It is too intertwined with the nerves in his s...

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Mavia Evenson

Mavia Evenson

Mavia was diagnosed with NF 1 when she was just a few months old. She is now four years old and is a lively and fun loving little girl. "No matter her struggles, she doesn't let anything keep h...

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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 because he was a large, healthy baby. Being the first child in the family, he has been spoiled from...

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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 were diagnosed when they were 8 months old from a tumor that was discovered on Taylor's back. Neurofib...

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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 the central nervous system. This causes me to have cafe-au-lait spots all over my body, plexiform n...

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CA - Raymond Thomas

CA - Raymond Thomas

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 ...

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Children's Tumor Foundation
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Phone: 212-344-6633

info@ctf.org