I am a train driver for RIO TINTO who works a 2week on 2week off roster. I am probably a borderline alcoholic, but "meh" so are most of my friends. I have no real political allegiance to any party and just want the government to do as its told and run the country for the peoples benefit instead of pandering to vocal minorities and/or big corporations. Not a big ask i think.
I lost my ten year old son to duchene muscular dystrophy on the 1/6/09 and just want them to find a cure for this and other genetic diseases. We can split the atom and walk on the moon yet cant find the money for research into things that really matter. crazy or what.....?
About my family:
My Wife's name is Debbie
Name(s) of child(ren)/individual(s) with Duchenne:
Andrew, I am so sorry to hear about William. That is so tragic to lose him so young, younger than most boys with Duchenne. I don't know how you feel, and I hope and pray I never will. It is my greatest fear! I agree with you - we can do all these amazing things and yet can't come up with a cure for Duchenne.
For what it's worth, we are hoping to change all that. My husband organised the Tour Duchenne earlier this year and raised $800,000 to go towards research at the INMR (in sydney) and the NMDRC (in melbourne). Even though we are currently based in Sydney, we have big thing planned for next year. We have just gotten Jerry Lewis aboard to help raise awareness in Australia and are organising another bike ride for next year.
We will find a cure, we will raise awareness so everyone knows what this horrid disease is and how it affects boys like mine and yours.