Aussies - Duchenne Foundation

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Aussies - Duchenne Foundation

Duchenne Foundation can be found at www.duchennefoundation.org.au

Join us to raise awareness in Australia.

Website: http://www.duchennefoundation.org.au
Location: Australia
Members: 23
Latest Activity: Jan 26, 2016

Discussions

Events - October 2009

Started by Deb Robins. Last reply by Deb Robins Oct 2, 2010. 3 Replies

National Registry

Started by Deb Robins. Last reply by Deb Robins Sep 20, 2009. 3 Replies

Clinical Trials

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Comment by michelle pomeroy on November 19, 2009 at 11:09pm
hi everyone also had ad on here in port lincoln sa. its great!! its got people talking and ask about my son jack xx we will be coming to sydney conference cant wait to meet some of you guys, Deb i dont know how you do all you do!! thanks for all the info i hope i get to meet you feb
Comment by Deb Robins on October 16, 2009 at 5:40am
Great michelle. We see it on HD Sport channel here, but not with the ticker tape of the Darling Habour Event. Thanks for letting us know it has airplay.
Comment by Michelle Hagarty on October 14, 2009 at 7:01am
Saw the Blueball advert on our local TV tonight. Good ad hope its successful
Comment by Deb Robins on September 23, 2009 at 9:39am
I started planning a fundraiser to be part of the inaugural ukulele festival here in Cairns, got great support from over 30 Australian artists. Someone with DMD thought of ukes before I did - see this lovely tribute on youtube.
http://www.youtube.com/watch?v=bZknGc7eDmI
Comment by Deb Robins on September 20, 2009 at 11:20pm
UPdates about our Feb 2010 Conference in partnership with INMR @ Westmead Childrens' Hospital is uploaded weekly. Visit our website or why not follow our conference updates on Twitter?
Comment by Deb Robins on September 12, 2009 at 5:18am
Hi Diane
If you can bring the boys to see Banana's in PJ's next month and help us celebrate the launch of our new brand, Blueball we can meet. My blokes are quite a bit older as you see my my image, but it is my youngest son affected too. He'll be at Darling harbour event and it won't be long until our 3rd national conference at Sydney Uni with Westmead . You will learn so much and meet kindred spirits. Noah is going to be OK, I believe that. Anyway you are in just the right spot and I wanted to put you in our loop! nite Deb (send me an email so I can subscribe you to our infrequent updates...deborah.robins@duchennefoundation.org.au
Comment by Deb Robins on September 12, 2009 at 5:11am
If you're in NSW, come to our Blueball launch event? Details in events: (paste url in the browser if you can't find it)
http://community.parentprojectmd.org/events/duchenne-foundation-launch
Comment by Johanna Marguccio on January 22, 2009 at 7:32pm
Hi to everyone out there, my name is Johanna and I have two sons, Dylan who is 3yrs and Caiden who is just about to turn 2yrs. Dylan was diagnosed with Duchennes at 20 months of age and started on steroids immediately, we now have him on Deflazacorte which the Childrens hospital Melbourne import in for us. Dylan has a deletion and I have just found out I am not a DNA carrier. I live in Craigieburn Victoria with my husband Tony our kids and a Golden Retriever named Cooper and a white cat called Tigger. Would love to chat with anyone else on the site if you would like?
Comment by KellyR on August 28, 2008 at 7:12pm
Hi!

I'm Kelly, mum to Aidan (5) and Owen (2.5).

Aidan was unexpectedly diagnosed with DMD in May 2007, 2 months before his 4th birthday, and has duplication of exons 8 & 9. I am not a carrier, and Owen has had a CK test, and the result has come back within the normal range.

We have been living in England since August 2007, yep, the weather is crap ;-) . I am originally from Melbourne, but moved to Cairns in my teens, which where my family still live and enjoy the never-ending sunshine!

Anyway, I thought I'd say a quick hello to everyone. I look forward to 'meeting' you all!
Comment by Jo-Anne on July 30, 2008 at 6:19pm
You are not the only one here, there are so many links, trying to read all of them and get familiar with them. I see that we are prescribed with Prednizone here as Deflazacort is not available in Australia, not sure if it can be ordered overseas or not. Hoping it will be available here one day too. Have you guys decided when you are moving back to Aussie? Speak to you soon. Jo-Anne
 

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