"Please vote for funding for aussie children's program at our national conference on the Gold Coast October 4-6 http://goo.gl/q3i4i"
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Deb Robins
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Gala Blue Ball
May 26, 2012 at 6:30pm to May 27, 2012 at 1am – Esplanade Hotel, Fremantle
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Deb Robins posted a status"Please take a minute to help all Aussie families out by voting for my SunSuper dream grant for $5000 this month? We wont have to find a spo"
Deb Robins commented on Deb Robins's group Aussies - Duchenne Foundation"Please vote for funding for a children's program at our joint national conference on the Gold Coast this coming October 4-6
http://goo.gl/q3i4i"
Deb Robins posted an event
Annual ICT (Italian Connection Trophy) Rally - Sydney to Melbourne at Aubury
May 25, 2012 at 6pm to May 27, 2012 at 7pm
Two teams from our DMD family are driving this year, Team Olsen and our defending champions, Tiina Raeko and Angella Solomou. Many teams fundraise for DF along the way however because Duchenne Foundation is the charity of choice for the event.See More
Deb Robins posted an event
Gala Blue Ball at Esplanade Hotel, Fremantle
May 26, 2012 at 6:30pm to May 27, 2012 at 1am
Join us for a spellbinding night of glamour and award winning entertainment. Indulge your senses as you step into an evening of Art and Creativity with Australian Entertainer of the Year, Brad Blaze. Hosted by Tim Gossage, you will enjoy delicious food, sumptuous wines and extravagant entertainment. Top Perth show band Topkats, will have you rocking the night away. Special guest, Brad Hogg, is supporting this event as a sponsor and Patron of Duchenne Foundation – (see his letter of support…See More
Deb Robins posted a blog postRock & hard place
Doug might be moving into a block funded house with three other people requiring high level support. They offered it to him finally last October and at the time there was space for 2 verbal people, including himself. This is "cripple nirvana" according to Doug, the kind of house one can only dream of right in the cultural centre of town, next door to one place he volunteers. But there was always a problem, nobody to wake up to him at night. They want him to trial this house, since I shook up…See More
Deb Robins posted a status"Doug gets his sip & puff next month. We had some help from the local football clubs. He also tries independent living next month perhaps - n"
Profile Information
- About me:
- I am a mother, teacher-librarian and on the board of Duchenne Foundation (DF formerly PPA). I volunteered for Parent Project Australia as inaugural secretary and webmaster, then president, now Nth Qld Director. Visit www.duchennefoundation.org.au to read some of our stories and activities. DF were the lead agency in seeking the working party which went on to create our National DMD registry. Our fundraising/awareness brand is located at: www.blueball.org.au I don't populate the blueball website however.
I also created a page of RSS feeds about Duchenne, called Duchenne in the News - www.pageflakes.com/debrobins
Even though our parent project "brand" has changed to Duchenne Foundation to include the name of our disorder, we are still associate members of the United Parent Projects Muscular Dystrophy. I became a 'believer' in 1996 when Pat Furlong first contacted me. A lot has happened since to improve our children medically, scientifically, politically - most of which was directly or indirectly inspired by this (now international) Parent Project phenomenon. I know the dream to end Duchenne started here, directly or by inspiration, and I believe it will end here.
- About my family:
- My husband Geoff and I have three sons in their 20's, the youngest with Duchenne. Matthew is a mechanical fitter and his partner is the sweet Miranda. Geoffrey (in the middle) is a psychology graduate and a parole officer and his partner Rose is lovely too.
Douglas, is the youngest of my three male issue who are all good men and good citizens. He graduated James Cook University in 2010 majoring in Theatre. He likes all sports, poker and of course hitting the nightclubs with his mates occasionally. He says by getting out and living his life like anyone else he raises more awareness for disabilities and DMD than I ever will - he's right - the world is always kind to my stoic son.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Douglas
- Age(s) of child(ren)/individual(s) with Duchenne:
- 19 or older
- City and State:
- Cairns
- Country:
- Australia
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Water Cooler
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Deb Robins's Blog
Rock & hard place
Posted on April 13, 2012 at 3:02am 0 Comments 0 Favorites
Doug might be moving into a block funded house with three other people requiring high level support. They offered it to him finally last October and at the time there was space for 2 verbal people, including himself. This is "cripple nirvana" according to Doug, the kind of house one can only dream of right in the cultural centre of town, next door to one place he volunteers. But there was always a problem, nobody to wake up to him at night. They want him to trial this house, since I shook up…
ContinueComment Wall (39 comments)
- At 10:59pm on October 21, 2011,
Andrea Cleary said… It's funny because when I see Doug's eyes, they are similar to my family, so when I see his photos, it's like I know him already, it's like looking at a cousin.
I really do think we are on the verge, turning the tide on this Duchenne, but I also feel deep in my gut that my Simon will miss the boat too, despite the advances and exon skipping. His efforts will benefit the next generation, and that's okay. To know how all the families have felt "so close" since the gene was identified 25 years ago, is overwhelming to me this week. And why should I expect any different?
Let's just love all our children (and grand kids) as best and as much as we can. Spoil little Hunter rotten!
Peace to you, Deb.
- At 7:40pm on October 21, 2011, Andrea Cleary said…
What a lovely grandson you have, he's a real sweetie.
- At 12:23pm on July 21, 2011, Andrea Cleary said…
Love your family photos, thank you for sharing!
Andrea from across the pond.
- At 6:19pm on March 22, 2011,
Lisa Guest said… - Hi Deb, forgot to mention my brother inlaw lives in Cairns, we hope to get up there in July...
- At 6:18pm on March 22, 2011, Lisa Guest said…
- Hi Deb, Thx for email. I have now added more pics! I have difficulty sometimes getting on line... probably to do with excepting Noah's diagnosis. Silly I know but at times I think how can this be happening to my beautful Angel. We are in the process also of having Gracie diagnosed with some syndrome. Whilst all her genetic tests are clear, we are told she definitely has something. Again hard to take especially after Noah's diagnosis... however I have the most amazing kids and you learn very quickly to take each day as it comes. Noah started school this year, Roo started 4 yr old kinder and Gracie just started in day care so I get sometime to myself... WOOHOO!!!!
- At 4:50am on January 19, 2011,
Kalyani Karanjikar said… hello deb robins
sorry for not responding.
do you have any idea about stemcell treatment ?
- At 10:42pm on April 25, 2010,
lynn weatherford said… - Dake got his gumby for his 25 th birthday and it was actually a dog toy but I could not resist.
- At 1:17am on February 19, 2010, Deb Robins said…
- Hi Tina & Darren, The cocktail function is the only social event I of which I'm aware. Hook up with other delegates to continue networking after the conference perhaps? The Mardi Gras is Saturday night I believe, but maybe just check out what's on in Sydney
Locals should have more information - perhaps they will comment here?
Looking forward to meeting you...just look for the guy in drag at the conference - that's me...except I really am a woman! love Deb
- At 11:41pm on February 18, 2010,
Tina & Darren Harris said… - Hi Deb we are going next weekend can you send me the info of what is on over the two nights thank you tina & darren harris
- At 11:12pm on December 22, 2009, Tina & Darren Harris said…
- Hi Deb,we hope you have a happy christmas and all the best in 2010 to you and your family.
from
Tina,Darren,Tyran,Marshall & Hannah-Lee Harris.
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Events
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Gala Blue Ball
May 26, 2012 at 6:30pm to May 27, 2012 at 1am – Esplanade Hotel, Fremantle
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