Local Athelete Raises Profile of Muscular Dystrophy

[Guest guest]

(Note to all: One More Time - CMT is NOT a " form " of Muscular Dystrophy! I have

already written a letter to the editor and the writer))

http://www.edmontonsun.com/news/edmonton/2010/05/13/13941186.html

One local athlete is on a mission to inspire the nation through his battle with

Muscular Dystrophy.

Sonny , 29, will be riding his hand-cycle coast to coast as part of his

journey across the country to rally support for the disease.

" The Marathon of Freedom is a coast to coast journey of awareness and

inspiration and of course, we've got many stops planned along the way to be able

to harness and spread that, " said .

was diagnosed at age five with Charcot Marie Tooth disease, a form of

Muscular Dystrophy that degenerates muscle and nerves in the legs and hands.

" Yes, I experience this (disease) in my body, but it isn't defining me — who I

am. It isn't who I am or ever will be, " said .

He began racing shortly after leaving the hospital following two heart surgeries

at age 15. He now trains " every day in every way, " adding that there is a

mental, physical and spiritual component to his training.

wants to inspire those with disabilities to look at them as abilities.

" Take inherently who we think we are and who we think we know we are and just

shine it, you know, beyond any limitations, beyond what you think is a disease, "

said .

The main goal of the marathon is to spread awareness and inspiration, although

they are also raising funds for the disease.

" If we could raise a million bucks, I would be happy with that, you know. We're

going to do much more than that. I know it, " said .

The Marathon of Freedom will kick off May 30 in with a Muscular

Dystrophy Walk and will come to a close in St. 's, Newfoundland about five

months later.

[Guest guest]

Sometimes you have no choice but to merge the two. Most people understand the

concept of MD. I am thankful that CMT is recognized by the MDA. CMT has a

confusing name that doesn't help at all. Someone in my family was asked to take

the drunk test. They tried to explain CMT and the cops eyes glazed over. Then he

said MD and the cop understood. If anyone asks me I explain the difference in

atrophy and dystrophy. They stop listening half way through. Can't blame them.

In a message dated 5/14/2010 11:29:34 A.M. Pacific Daylight Time,

gfijig@... writes:

Note to all: One More Time - CMT is NOT a " form " of Muscular Dystrophy! I have

already written a letter to the editor and the writer))