I want to tell you a story about myself, apparently every good story starts off with , Hi my name is Simon Johnson and I am a CMT1A patient. My first memories starts of at the age of 4 years old as I had to spend countless weeks in hospital, undergo  hundreds of tests, in the early in the late 70's , 80s going through severe electric shock treatments, and feet operations, and being told that you're going to be in a wheelchair by the age of 18, which was very scary for a young lad. Back in the late 70s early 80s there was not too much understanding for people with disabilities. So going through school with special shoes and leg braces splints just made me a big taggart from other kids , then the bullies came out when the name calling began from Day go . Now I am 50 years old with social anxiety which stops me getting close to people, I always double questioning myself, Now little about CMT1A ,  it is a Nerve and muscle disorder which  under nervousness can create too much protein a PSP22 protein that attacks the muscles and cause muscle failure and the lack of motivation. This causes you to fall over all the time and can't walk too far because it's like walking on broken Glass daily. Severe cramps and sprained ankles. So because of this it is very hard to hold down a job as you become a health and safety risk. So throughout life I had to be very creative to work out ways to work for myself.  It's been very depressing for me to provide for my family, All I want is to be able to work an honest day's work like others. The only thing that gets me through day by day is my faith in my god Jehovah. Isaiah 35:5,6. ( 5, at that time the eyes of the blind will be opened, And the ears of the deaf will be unstopped. 6, At that time the lame will leap like the deer, And the tongue of the speechless will shout for joy. )

I hang out for this day for everyone, Otherwise  it would be so hard. 

Now being 50 it's getting worse for my muscle wasting now I've lost the muscle in my hands on thumbs, which is making it really hard to do daily tasks. Because this disease does make you look quite normal so when people look at you they judge you thinking you're lazy and unmotivated to do anything, without them knowing what this disease causes. So here I am now trying to do my bit today to help thousands of people that are suffering with CMT to raise money for the CMT research. BTW are doing a fantastic job. 

 I just want to say and acknowledge any other person that they're going through other diseases or other trials and tribulations. I really fully respect you, but today this is my story.