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 regular kid in honor classes and always on High Honor Roll. I love science :)I love volunteering to help developmentally disabled kids in their special basketball & baseball programs and also in Best Buddies Club. NF just keeps interupting my life !!! In 2008 I had a meningioma tumor removed from my spinal cord and in 2009 I had 3 brain surgeries in one week to remove a brain tumor, blood clot and insert a vp shunt.For the past 12 months I have been in a clinical drug trial hoping to do my part in finding a treatment for NF and hopefully one day soon a cure for myself and all the people who suffer from NF.I have to go to the doctor in NYC once or twice a month for bloodwork, checkup and meds .Every 3 months I get a 2 hour MRI of my brain & spinal cord,to monitor the tumors that I still have - and an eccocardiogram and audiogram. We NEED to find a cure and research medications to stop these tumors from growing REALLY SOON . I have BIG plans and dreams and I will NOT let NF2 stop me from doing what I want to do. So PLEASE contribute whatever you can to help NF research .All money donated goes directly to The Childrens Tumor Foundation to be used for research to find treatments and hopefully a cure for NF. Me and my family REALLY appreciate it alot. Thank You so much:) Making offline donations: All check donations should be made payable to CTF. When mailing your check please write in the memo 'Bailey Gribben R4R 2012' . Please mail check to: Children's Tumor Foundation, Racing4Research 2012, 95 Pine Street, 16th Floor, New York, NY 10005. The Children's Tumor Foundation is a 501(c)(3) organization. For more information about neurofibromatosis and racing 4 research, please visit the CTF website www.ctf.org Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer than NF1, occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark.

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Meet Our R4R NF Heroes

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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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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 - 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 fract...

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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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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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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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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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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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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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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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VA - Evan Perdew

VA - Evan Perdew

Evan was diagnosed with NF when he was 3 months old. In 2009, doctors found a large plexiform neuro...

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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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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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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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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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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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