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. The ugly came in January 2009 when the plexi which has caused damage to her kidney and bladder required a bypass of bladder. Unfortunately, the plexi continues to grow at a fast pace. Our prayers are to keep the plexi at a stand-still or slow pace to enable the research to catch up to make it melt away.

Nicole has a wonderful support system with family and friends. She attends Holy Child school, where she enjoys learning, singing, dancing, and playing with her friends. When she is not in school, she enjoys playing with her dolls, shopping and watching movies. Her Mickey Mouse goes everywhere we go, including countless doctor appointments and every MRI, dinner, travel, church and school.

Nicole's brother has taken his quest to teach the students of the Seckman middle school about NF. They are working on fundraisers for helping find a cure to NF. Our team is also joined by friends and family who are helping our family as we race to find a cure to give Nicole the ability to walk and be independent.

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Meet Our R4R NF Heroes

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Manny Evans

Manny Evans

"My name is Emmanuel Evans but I go by Manny. I was diagnosed with NF1 when I was six months old. I ...

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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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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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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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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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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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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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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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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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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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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 - 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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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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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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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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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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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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