What's New in the Duchenne Nation
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What's New in the Duchenne Nation
What is making news round Australia and the world regarding boys, men, rare girls and families living with Duchenne.
Curated by Deb Robins
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A Breath of Fresh Air - Duchenne Foundation's Melbourne Symposium 2014

A Breath of Fresh Air - Duchenne Foundation's Melbourne Symposium 2014 | What's New in the Duchenne Nation | Scoop.it
Melbourne 2014, will showcase international respiratory and cardiac experts in order to give those affected by Duchenne, first-world knowledge and longer, stronger lives.
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Handmade Fabric Balloon Balls

Handmade Fabric Balloon Balls | What's New in the Duchenne Nation | Scoop.it

Fabric Balloon Balls

These fabric balloon ball covers have been handmade in a smoke and pet free environment by Michelle who is generously donating 2 of her lovely creations to the Symposium raffle for one lucky family.  Thank you, Michelle from Balloon Balls.

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PhD with Duchenne inspires PWD

PhD with Duchenne inspires PWD | What's New in the Duchenne Nation | Scoop.it
A PhD student diagnosed with a debilitating condition at the age of seven said "disability is no barrier" as he looks to inspire others to overcome adversity.
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Bring the Kids to "A Breath of Fresh Air"

Bring the Kids to "A Breath of Fresh Air" | What's New in the Duchenne Nation | Scoop.it

Here are our BOTH our children's group supervisors, Effie Themis and Elizabeth Demetriou. How can we not trust these gorgeous women with our most precious possessions?  Love your work ladies.  Now there's no excuse to register Saturday and spend Sunday with the children in Melbourne.

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Tour Duchenne 2014- Featured Rider Tatiana Marinho

In just 22 days  our Tour Duchenne cyclists, including Tatiana, will embark on the gruelling ride from Adelaide to Melbourne, finishing up at the Jasper Hotel on March 29, as our "A Breath of Fresh Air" Melbourne Symposium concludes. Which celebrity  will be keeping them company on the bikes on the last day?

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Dr Lisa Wolfe Joins us Down Under for "A Breath of Fresh Air"

Dr Lisa Wolfe Joins us Down Under for "A Breath of Fresh Air" | What's New in the Duchenne Nation | Scoop.it

Lisa Wolfe is an Associate Professor in Medicine-Pulmonary and Neurology at the Northwestern University Feinberg School of Medicine, Chicago, Illinois. Dr. Wolfe's academic and clinical focus is in the areas of home based ventilation and Sleep Medicine, with a specific focus in the support of those with Neuromuscular Disorders. She is currently a pulmonary consultant to the Les Turner ALS foundation, the Muscular Dystrophy Association, and the Rehabilitation Institute of Chicago.

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Eminent Respiratory Specialist to Present at Melbourne Symposium - 29 Mar

Eminent Respiratory Specialist to Present at Melbourne Symposium  - 29 Mar | What's New in the Duchenne Nation | Scoop.it

Michel Toussaint, PhD, is a physiotherapist affiliated with the Rehabilitation Hospital Inkendaal, near Brussels in Belgium; where he manages the Centre for Home Mechanical Ventilation. For over twenty years, he has been a member of a multidisciplinary team led by Dr Soudon, who have internationally recognized experience in the multidisciplinary treatment of patients affected by various neuromuscular diseases - Duchenne muscular dystrophy in particular.

 

In 2008, Michel Toussaint obtained his PhD degree at the Faculty of Medicine, Catholic University of Leuven. His thesis focused on Daytime Ventilation in Duchenne patients. This research represented the largest body of evidence worldwide concerning Duchenne patients using Mouthpiece (Sip) Ventilation during the daytime. Dr Toussaint has published over ten papers as first author.

 

Michel's ambition is to develop evidence-based knowledge about the care of Neuromuscular patients that may immediately be useful in practice. This includes the following fields: nocturnal and full-time ventilation, invasive and non-invasive techniques of ventilation, manual and instrumental techniques of airway clearance, swallowing and emergency care, education of patients, families and caregivers on respiratory techniques, and maintenance and hygiene of respiratory material. 

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Doability are Exhibiting at our Melbourne Symposium

Doability are Exhibiting at our Melbourne Symposium | What's New in the Duchenne Nation | Scoop.it

Doability Australia, supply independent living aids, particularly electric scooters, to Duchenne Foundation. Tom and his team will be exhibiting on March 29th at the Jasper.  If you are coming from interstate, Tom also hires our power wheelchairs from $50 per week. 

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Tablelands Advertiser picks up the Propelled Phenomenon

Tablelands Advertiser picks up the Propelled Phenomenon | What's New in the Duchenne Nation | Scoop.it
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Propelled Reviewed by Glyn Davies of Arts Hub

Propelled  Reviewed by Glyn Davies of Arts Hub | What's New in the Duchenne Nation | Scoop.it
A dazzling performance, marked by a sense of humour which is at once laconic and sardonic.
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Who is our Keynote Speaker @ "A Breath of Fresh Air", Melbourne Symposium Mar 29?

Who is our Keynote Speaker @  "A Breath of Fresh Air", Melbourne Symposium Mar 29? | What's New in the Duchenne Nation | Scoop.it

We are honoured once again in 2014,  to host  Pat Furlong of PPMD to deliver key messages and summarize the state of research right across the Duchenne Nation.  Pat brings our international speakers in attendance up to five - it is going to be a powerful and valuable meeting indeed.

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C'mon Aussie, share Duchenne Foundation's video and "like" our FB page

C'mon Aussie, share Duchenne Foundation's video and "like" our FB page | What's New in the Duchenne Nation | Scoop.it

Watch our new 30sec video http://youtu.be/3hSqrBi6H3U   and 'like' the peak body for Duchenne in Australia on  FB. Duchenne Foundation

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SARAH URQUHART INTERVIEW DOUG ROBINS - YouTube

Fellow thespian and local community radio announcer, Sarah Urquhart interviews Doug Robins about the people involved in the play, Propelled and also the chal...
Deb Robins's insight:

This is one of the best interviews with Doug about Propelled  probably because he has acted with Sarah and felt at ease with her. 

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MD-CARE Act Amendments Passed in US!

MD-CARE Act Amendments Passed in US! | What's New in the Duchenne Nation | Scoop.it
The House of Representatives today approved the landmark MD-CARE Act so the law can continue getting results for all patients impacted by Duchenne and other f…
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Tour Duchenne List of Riders - Send them a message and Ride in Spirit

Tour Duchenne List of Riders - Send them a message and Ride in Spirit | What's New in the Duchenne Nation | Scoop.it

Three celebrities join the Tour Duchenne pack leaving Adelaide in a week’s time. They are: Greg Matthews, Marty Switzer and Spida Everitt. 

This is a good time to visit the Tour Duchenne Website and Facebook Page to tip your hat to all the 2014 riders. The honour roll: 
Adrian Moose Skeggs, Anna Whiddon, Anthony O'Brien, Ashley Heather , Brad Gowenlock, Chay King, Damien Fitzpatrick, Dannie Francis , David Docking, David Kuhnermann, Frank Jennings, Glen Condie, Glenda Signorini, Guy Neale, Harry Timotheou, Jack Singleton, Julian Thompson, Lane Newton, Mal Jago, Marty Beesley, Nick Burnham, Peter Alexander, Rob Martin Murphy, Robert Belgiovane, Rob Stevens, Ron Hodge, Steve Mater, Tatiana Marinho, Trent Beacroft, Frank Jennings.

Throughout the next fortnight, you can help by sending messages to our riders. Now is the time for Spirit Riders and everyone to prepare messages of support to post on our facebook pages and share on both Tour Duchenne and Duchenne Foundation pages. Let’s all share and tweet to raise even more awareness for what is set to be the biggest month in our 2014 calendar

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Updated Program, Speakers and Info -Melbourne Symposium 2014

Updated Program, Speakers and Info -Melbourne Symposium 2014 | What's New in the Duchenne Nation | Scoop.it

Check back to our symposium page to view all the latest info - speaker profiles, program, tips etc.

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Saving Noy - New Israeli TV Documentary

This is the story of Noy, a six year old suffering from Duchenne muscular dystrophy (DMD) and his family struggling to find a cure for his disease."

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Duchenne Nation Research News

Duchenne Nation Research News | What's New in the Duchenne Nation | Scoop.it
Newswire articles about Duchenne muscular dystrophy research.
Let's join our research updates and other updates together?
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Cocktail Fundraiser Feb 21 Brisbane

Cocktail Fundraiser Feb 21 Brisbane | What's New in the Duchenne Nation | Scoop.it

Anna Whiddon is a brave Queensland mum, who is taking on the gruelling Tour Duchenne! Her 8 year old son has Duchenne. From March 22 to March 29 she will be giving it all she has got - and more - this is a tough 1000km, 8 day course from Adelaide to Melbourne via the great Ocean Road.
“This year we are wanting to be a part of Tour Duchenne and help raise as much funds as possible for them and the Duchenne Foundation.

Time is precious to all, but more so for our sons.

Please help us, help them, before time runs out.”

A fundraiser is being held in Brisbane; on Friday 21 February 2014 to boost her fundraising tally - more details on the flyer attached. If you are in the area, please consider supporting this event.
Tickets are $150 ea and include canapés, champagne and selected wines; and are available from www.brisbanetickets.com.au for further information contact Charmaine on 0401 274 969 or email – willkeepmoving@optusnet.com.au

If you would like to support Anna in her incredible quest, you can also visit her fundraising page http://www.raiseforcause.com/td_supporter.php?myid=39

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PakMag Cairns - February Edition

PakMag Cairns - February Edition | What's New in the Duchenne Nation | Scoop.it
Deb Robins's insight:

FNQ Pakmag February edition features 2 Cairns mothers from different generations sharing tips to diagnose children earlier and parent them effectively. Pakmag is a free community parenting magazine for young families.

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Mind over matter...Cairns Sun Review

Mind over matter...Cairns Sun Review | What's New in the Duchenne Nation | Scoop.it
Deb Robins's insight:

Another strongly positive review.  Doug and the Propelled creatives around him are adjusting perspectives and touching hearts. 

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Actor Faces his Demons in Cairns - Raises Awareness for Duchenne

Actor Faces his Demons in  Cairns - Raises Awareness for Duchenne | What's New in the Duchenne Nation | Scoop.it
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William Fraser's Mum is Cycling the Tour Duchenne for Will and all Affected

You've watched  Anna's story on YouTube, read more of her story on  her "Raise for a Cause" page. 

 

http://www.raiseforcause.com/td_supporter.php?myid=39

 

Please donate so that Anna is on track to participate in the Tour Duchenne 22-29 March 2014

Deb Robins's insight:

Anna is our poster mum cycling 500kms a week in training and prepared to go the distance between Adelaide and Melbourne. Please share her story to acknowledge her personal sacrifice and her unconditional love for Will.  Last but not least, Anna  is riding so that Duchenne Foundation can continue our mission to support all Australians with Duchenne holistically and effectively. 

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Pat Furlong to be Guest Speaker in Cairns for the Opening Night of Propelled Jan 31

Pat Furlong to be Guest Speaker in Cairns for the Opening Night of Propelled Jan 31 | What's New in the Duchenne Nation | Scoop.it

Get Propelled into a New World  (Cairns Post 23/01/14)

Reality meets fantasy in a new play, writes Denise Carter.

 

It's down to the pointy end of rehearsals for JUTE's Propelled due to open next Friday. The story follows one young man's struggle for independence and quest to deal with Duchenne muscular dystrophy and blends realism with the fantastic.


On opening night special guest speaker is founding president and CEO of Parent Project Muscular Dystrophy, Pat Furlong, who travelled from the US for the occasion.


"We have so many people involved but it is absolutely Doug on stage", director Suellen Maunder says.

Doug Robins is the star of the show and playwright, along with Jane Modric, who wrote last year's JUTE production, 'Soph and the Real World', and his tale is autobiographical. He, with JUTE, raised funds for the show through crowd funding.

 

"His extraordinary storytelling engages with the audience - it is a beautiful performance," Suellen says.  "Sound and imagery creates the whole world around him."

One of the elements of the fantastical or mystical is a centaur, a mythical creature, part human and part horse, which Doug read about as a child.

"It is a really intense story but what's gorgeous about Doug is his great sense of humour and the cheekiness in his smile is so engaging, "Suellen says.  "The story is about a young man coming of age and facing his demons and it is joyous and wonderful."


The production has a dynamic creative team with set designers Simone Tesorieri and Simona Consentini, who worked previously in large Italian theatres, film-maker and musician Kyle Wilson, musician Trish Molloy, and lighting design by Brisbane based Daniel Anderson.

 

Watch Propelled at JUTE at The Centre of Contemporary arts, 96 Abbott St, January 31-February 8.  Book online at www.jute.com.au, call 40509444 Mon-Fri or visit the office, 10am-5pm Mon to Fri.

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