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.
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.
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?
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.
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.
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.
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.
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
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 – email@example.com
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.
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.
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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