I am a research physiotherapist, clinical trials coordinator and PhD student at The Institute for Neuromuscular Research at The Children's Hospital at Westmead.
About my family:
I do not have any family members affected by DMD but I have spent most of my working days assisting families affected by DMD either through my physiotherapy work or by guiding them through our clinical trials.
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This is for all Australians affected by DMD. The inaugural "The Tour Duchenne" will start in Sydney on March 7th at 7am and will end in Melbourne on March 16 at around 2.30pm.
The riders will start their journey at The Institute for Neuromuscular Research (INMR), based at The Children’s Hospital at Westmead, then make their way via Wollongong, Batemans Bay, down the picturesque south coast of New South Wales, through country Victoria and then onto Melbourne, where they will finish at the National Muscular Dystrophy Research Centre (NMDRC).
Our plan is for this to become a huge nationwide event, so we need your support for this initial ride. You can view all the details about the ride and its participants at www.tourduchenne.com.
Please ask everyone you know to support this fantastic cause. Our aim is to raise $1million to go towards finding a cure for this insideous disease. Whilst a cure may be too late for some boys, we can spare future generations from suffering from DMD.
For those people based in Sydney, there is a "Farewell" event at The Cargo Bar on Wednesday, March 4 2009. Admission is $100 and will include food and drink, silent auctions, celebrity host Tom Williams, and guest speakers. There will also be lucky door prizes, and all $100 tickets receive 5 entries into our guessing competition, with some AMAZING prizes. You can see a list of prizes on our website. To buy tickets to this event, please visit the site http://www.mda.org.au/events/tourD/launch.asp.
We need your support, and that of everyone you know. We HAVE to find a cure, we all want our little boys to grow up and be wonderful, happy and healthy adults. We can achieve this by starting here!
Also, if you (or anyone you know) needs to contact me at all, you can reach me on firstname.lastname@example.org or here on PPMD. Any questions at all, I will be able to answer.
Welcome and thank you for coming aboard to help and support the families in need. This is great to know that others out there are here to help. As below, we can do with all the help we can get. You are never to old to learn everyday.
Welcome and glad to have you here, esp. given that you do not have family affected by DMD! We can use all the support we can get. There are quite a few of you Aussie's here on this sight--love it!! Look forward to any insight you can give to us.