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Deb Robins
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- Australia
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Deb Robins's Groups
Deb Robins's Discussions
Jouse controller
Started this discussion. Last reply by Michael Piacentino Feb 21, 2013. 1 Reply 0 Favorites
Cardiac Care
Started this discussion. Last reply by lisa burke Oct 14, 2012. 2 Replies 0 Favorites
Deb Robins's Page
Profile Information
- About me:
- I am a mother, teacher-librarian and was a founding board member of Duchenne Foundation (DF formerly PPA) for 12 yrs. I served as inaugural secretary and webmaster, then president, and lastly Qld Director - all voluntary. I resigned in May 2015.
I still administer an online newsletter Duchenne Nation Research News. http://www.scoop.it/t/research-news and participate in national and international advocacy as an independent consumer and advocate.
I became a 'believer' in 1996 when Pat Furlong first contacted me and have watched first hand as both PPMD and UPPMD International more or less precipitated the genetic revolution unfolding in recent years. 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 30's, the youngest with Duchenne.
Douglas, is the youngest of my three male issue who are all good men and good citizens. Doug is an altruist being voted school captain of Smithfield High School in 2005. He graduated with an Arts degree from James Cook University in 2010 majoring in Theatre. He continues to write plays, act in community theatre (mostly Shakespeare at the Tanks) and he volunteers in the community to assist intellectually impaired adults with drama. He has acted in two professional plays, one written about him, "Propelled" by Jane Modric; and the second role written for him, "Here we All Are Assembled" by Katherine Ash - an absurd dystopian play inspired by Hamlet. In 2012, Doug attained his certificate of marriage celebrancy from a recognized academy. He likes all sports and in July 2019 married Lauren. In 2012 Doug commenced daytime sip mouthpiece ventilation with a portable ventilator and he continues to thrive and his heart function continues to be stable from beta blockers & more recently eplerenone. 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:
- Cairns
- State:
- Queensland
Deb Robins's Photos
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…
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Thanks for all the information.....waiting for an appoinment from westmead ..definitely send you my contact details...
Dont know much about dmd families in darwin.....i am blessed with a son 8yrs this month on 11th..and a sweet daughter 4 yrs. Still waiting for the blood test reports for the underlying cause of dmd ....hoping for something good in future....ready to help our community.
Hi Deb, I just moved and finaly got my internet back on-hence the delay in responding. Please feel free to get in touch with me. Thanx! Sherri Looper
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.
What a lovely grandson you have, he's a real sweetie.
Love your family photos, thank you for sharing!
Andrea from across the pond.
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