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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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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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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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 - 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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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...

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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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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-lai...

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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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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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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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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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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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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 ...

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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 si...

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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 wil...

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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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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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Children's Tumor Foundation
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info@ctf.org