Brandon is a 8-year-old boy from Riverside RI; he has been clinically diagnosed with CMT, a neuromuscular disorder. Brandon walked until the age of 2 when he lost mobility from the flu. From 2005 through 2007 Brandon’s family took him to chiropractors and neurologists in Boston, Providence and Detroit to figure out exactly why he lost his mobility and what was causing his problem. The winters of 2005 and 2006, Brandon had a several stays at Hasbro Children’s Hospital in Providence, RI for pneumonia. The winter of 07’ was the most challenging. Brandon spent 10 weeks in the ICU unit of Hasbro Children’s Hospital. He under went a life saving surgery and a second surgery to insert a permanent tracheotomy to help clear his weak lungs. Since being home from the hospital Brandon continues to have numerous doctor’s appointments and needs continuous care. He is confined to a wheelchair and a cumbersome medical device that he needs to breathe. Yet regardless of the remarkable setbacks he’s encountered in his short life, he is vivacious and has a personality that you’d have to be lifeless not to fall in love with.

Brandon is now in the 2nd grade. His health is improving but he still relies on a wheelchair to get around. Brandon’s family is trying to make his life as normal as possible for an 8-year-old boy. They built a temporary ramp in the front of his house. It was a big milestone for Brandon to enter his home on his own. He had the biggest smile on his face. Brandon's family needs to make major renovations to their home so he can move around freely in his wheelchair and a bathroom that is handicap accessible.

Please help support Brandon and our great event; you will help one of the greatest loves of my life and give my buddy a chance to be a typical kid. With the help and support of generous people like you I know we can pull together and help an extraordinary kid. Thank you for visiting our website….

This inherited neurolomuscular syndrome was discovered by three European doctors, Jean Charcot, Pierre Marie and Howard Tooth in the late eighteen hundreds. Their surnames are represented in the disease name, and this often misleads and confuses the general public because it does not reflect or explain the nature of the disease itself. CMT is considered to be the most commonly inherited form of peripheral neuropathy affecting approximately one in 2,500 adults. CMT is diagnosed by clinical features of muscle atrophy, age of onset, electromyography (EMG), nerve biopsy and through genetic testing. Charcot-Marie-Tooth disease (CMT) is a hereditary motor-sensory neuropathy (HMSN). HMSNs are a group of progressive neurological disorders that affect the motor and sensory units of the peripheral nervous system. CMT causes weakness because the nerve signals are impaired (demyelinated) before they reach the muscle. Over time this causes atrophy (a loss of muscle strength) in various areas of the body such as the feet, legs, hands, and diaphragm. Although considered a "family disease", people are commonly affected differently. To date there is no known cure or treatment to arrest levels or rates of progression.