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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