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Deb Robins
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  • Cairns
  • Australia
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Deb Robins's Discussions

Jouse controller

Started this discussion. Last reply by Michael Piacentino Feb 21, 2013. 1 Reply

Cardiac Care

Started this discussion. Last reply by lisa burke Oct 14, 2012. 2 Replies

 

Deb Robins's Page

Latest Activity

Deb Robins might attend PPMD's event
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[Upcoming Webinar] Results from Phase I/II HOPE Clinical Trial of CAP-1002 at Online Webinar - Eastern Time Zone

April 28, 2017 from 11am to 12pm
Friday, April 28 at 11:00 AM ESTPlease join Parent Project Muscular Dystrophy, Coalition Duchenne, and Capricor as we host a webinar Friday, April 28 at 11:00 AM EST to hear a community update on the six-month results from Capricor's randomized Phase I/II HOPE Clinical Trial of CAP-1002 (allogeneic cardiosphere-derived cells), an investigational candidate for the treatment of Duchenne.Hosts:Cath Jayasuriya, Founder and Executive Director, Coalition DuchenneKathi Kinnett, SVP Clinical Care,…See More
Apr 26
Deb Robins is attending PPMD's event
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[Upcoming Webinar] Idebenone Clinical Trials in Duchenne at Online Webinar - Eastern Time Zone

March 9, 2017 from 1pm to 2pm
Thursday, March 9 at 1:00 PM EST Please join Parent Project Muscular Dystrophy and Santhera Pharmaceuticals as we host a webinar Thursday, March 9 at 1:00 PM ET to discuss idebenone clinical trials in Duchenne. Dr. Thomas Meier will present a history of the idebenone development program, discuss the need to address respiratory decline in Duchenne, explain the currently recruiting SIDEROS clinical trial of idebenone in boys using steroids, and leave time for discussion and fielding of…See More
Mar 2
Deb Robins is attending PPMD's event
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[Upcoming Webinar] MoveDMD Trial: Catabasis Provides Update at Online Webinar - Eastern Time Zone

February 2, 2017 from 1pm to 2pm
Thursday, February 2 at 1 PM ET Yesterday the Duchenne community learned that Part B of the MoveDMD trial did not meet its primary endpoint, which was to demonstrate a statistically significant decrease in T2 MRI with edasalonexent after 12 weeks compared to placebo in people affected by Duchenne. There were some potential treatment-associated effects at 12 weeks in the 100 mg/kg/day treatment group when compared to placebo. Therefore, Catabasis will look to see if the signals strengthen in the…See More
Feb 2
Deb Robins is attending PPMD's event
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[Upcoming Webinar] NS Pharma's Exon 53 Skipping Program at Online Webinar - Eastern Time Zone

November 16, 2016 from 1pm to 2pm
Wednesday, November 16 at 1:00PM ESTPlease join Parent Project Muscular Dystrophy and NS Pharma (US subsidiary of Nippon Shinyaku, Co.,Ltd) as we host a webinar Wednesday, November 16th at 1:00 PM EST to discuss NS Pharma's Exon 53 Skipping Program.Dr. Clemens and Lauren Morgenroth will review data from the Phase I study conducted in Japan and will present the study design for the trial that is opening in the US later this month.Speakers:Abby Bronson Senior Vice President of Research Strategy,…See More
Nov 10, 2016
Deb Robins is attending PPMD's event
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[Upcoming Webinar] MissionDMD: FibroGen’s Anti-Fibrosis Program at Online Webinar - Eastern Time Zone

May 18, 2016 from 1pm to 2pm
Wednesday, May 18th at 1pm easternPlease join PPMD and FibroGen as we host a webinar Wednesday, May 18th at 1PM ET to discuss FibroGen’s investigational drug FG-3019 (which is an anti-CTGF monoclonal antibody) and the launch of FibroGen’s MissionDMD program that is currently being conducted to investigate FG-3019 in Duchenne muscular dystrophy. Specifically, this presentation will provide the rationale for evaluating FG-3019 in Duchenne patients and a description of the ongoing clinical trial…See More
May 12, 2016
Deb Robins commented on John D. Porter, PhD's blog post A Paradigm Shift in Drug Discovery
"JP, that's an insightful analogy for advancement, you picked up on. We're going to need to collect so much more data to make such algorithms simulate the effect of experimental drugs credibly and/or dosages. There are so many variables in…"
Oct 29, 2015
Deb Robins is attending PPMD's event
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Webinar: PF-06252616 (Anti-Myostatin) - Scientific Rationale and Phase 2 Clinical Trial Design at Online Webinar - Eastern Time Zone

June 3, 2015 from 1pm to 2pm
Wednesday, June 3, 2015 from 1pm to 2pm EDTThe webinar will provide an overview of Pfizer’s approach to advancing the science of an anti-myostatin monoclonal antibody as an investigational compound for potential therapeutic use in muscle wasting diseases, such as Duchenne muscular dystrophy. Dr. Michael Binks, VP and Head of Clinical Research for Pfizer’s Rare Disease Research Unit, will give a presentation and answer questions that have been submitted.Questions:Please submit questions in…See More
May 29, 2015
Deb Robins commented on PPMD's blog post The “Let’s Get Them Moving” Workshop
"Lifted to imagine possibilities from so many expansive stakeholders in terms of making the patient the core of endeavours rather than the gizmo(s).  Many test pilots will be needed to ensure that new technologies are helpful and are not onerous…"
May 6, 2015

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 20's, the youngest with Duchenne. Matthew is a mechanical fitter has given us a sweet little grandson, named Hunter. Geoffrey Phillip (in the middle) is a psychology graduate and a parole officer and his wife Rose is as sweet and beautiful as her name implies.

Douglas, is the youngest of my three male issue who are all good men and good citizens. Doug is also an altruist being 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 and he volunteers in the community to assist intellectually impaired adults with drama. In 2012, Doug attained his certificate of marriage celebrancy from a recognized academy. He likes all sports, poker and of course hitting the nightclubs with his mates occasionally. In 2012 Doug commenced daytime sip mouthpiece ventilation with a portable ventilator and he continues to thrive as his heart function continues to be stable from beta blockers. 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

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Deb Robins's Blog

Rock & hard place

Posted on April 13, 2012 at 3:02am 0 Comments

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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At 11:05pm on February 16, 2015, Shelly said…
Can you please send me your email id so that i can send you my contact details...
At 10:59pm on February 16, 2015, Shelly said…
Hi Deb
Thanks for all the information.....waiting for an appoinment from westmead ..definitely send you my contact details...
At 3:50am on February 15, 2015, Shelly said…
I ll definitely be in contact through email....n ....glad to meet you...thanks n regards...stay blessed...
At 3:47am on February 15, 2015, Shelly said…
Hi Deb
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.
At 12:29pm on February 23, 2013, Sherri Looper said…

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

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!!!!
 
 
 

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