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Comment by Deb Robins on August 22, 2012 at 8:44am

Hi Michelle, you know we haven't discussed that we are working so hard to make the event itself a success. In the past we have put a few presentations, not all, online since speakers must permit & with concurrent sessions you have to choose...but I'm not sure because each time we do it, we take a new partner. Wish you could come but I understand all the things going down in our lives. I still work 3 days a week at school and my sister passed away far away a couple weeks ago, so there are always unexpected events and sacrifices have to be made even if the boys are well. Perhaps you can persuade your son's PT, HOSE or neurologist to attend as we will give statements to earn continuing education points for professionals. I guess they have the knowledge then to intervene with many more boys during their careers. Sorry to hear Aaron is uncomfortable and hope it gets sorted fast. Thanks for any promotion you can do in your networks and with families and professionals in Adelaide.

Comment by Michelle Hagarty on August 22, 2012 at 6:59am

Hi Deb, I really thought I was going to make it this year but unfortunately won't be able to. I'm taking Aaron on a school camp to Canberra a few weeks after the conference & have to take a week off work for that. I've also been having time off work during the year to Aaron to Adelaide for treatment on compressed fractures of his spine. This has been monthly trips with 3 more to go that we know of. I hope it goes really well for all involved. Will there be any information available online etc that we can look at?

Comment by Deb Robins on August 22, 2012 at 6:05am

REMINDER: We are now down to single digit countdown before the Early Bird registrations deadline closes in just over a week - Aug 31st.

We want to welcome you to the Gold Coast, to Ride the Wave of change for the care and treatment of the major muscle conditions - with a focus on Duchenne & Becker.

Website: http://www.ridingthewave.org.au
Newsletter: http://www.scoop.it/t/the-inside-scoop-on-the-national-conference-o...

With 13+ international headliners from American and Europe, not including industry speakers, this is an unprecedented educational opportunity targeting the whole neuromuscular community including family members and educators. Please scan the latest copy of the draft program attached.

Visit the conference website for more information, or scan our online newsletter including the latest version of the program.

This is a world class event on our doorstep - unparalleled. Even overseas travel would not locate an international conference of this calibre targeting both medicos and laypersons, and hosting so many world experts -plus the best from around Australia.

There is nothing more important on the horizon for your son, than learning how to optimize him, that's why three organizations have stepped up to assist families financially to experience this program.

By contacting Helen Posselt there is definitely assistance for family members, made available by the conference partners Duchenne Foundation, Muscular Dystrophy Qld and the Muscular Dystrophy Foundation. We know that you won't regret making the decision to learn as much as you can about first-world care for your son (and rare daughter) so just do it, contact Helen to discuss your options.