Our NF Heroes

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 "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below to read their stories and view their profiles.

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 - 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...

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...

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...

Josiah A.

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...

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 ...

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...

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...

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...

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...

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...

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...

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 ...

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...

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'...

Jack is a kind, energetic, inquisitive, adorable five 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 e...

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...

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...

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 pe...

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...

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 father Rand...

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...

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...

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...

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...

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...

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...

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...

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 ...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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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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. ...

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...

Erin Earle

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

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...

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 ...

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...

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...

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...

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 ...

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

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...

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 ...

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...

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...

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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