The Inside Scoop on our National Conference Gold Coast Oct 4-6
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The Inside Scoop on our National Conference  Gold Coast Oct 4-6
Conference news and behind the scenes stories about 2012's premier educational event for the neuromuscular community.
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Welcome to ridingthewave.org.au

Welcome to ridingthewave.org.au | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

The home page of Riding the Wave 2012.  Scan our webpage frequently as we add new speakers, sponsors, conference sessions, opportunities and more.  This October, join us to update your knowledge of the major NMD's on the beautiful Gold Coast.

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trampolinecalf's comment, September 27, 2013 2:53 AM
nice
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Child Muscle Weakness

Child Muscle Weakness | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Helen Posselt presented on her collaboration to create the "Early diagnosis makes a difference" website at ChildMuscleWeakness.org 

 

All videos in her slide presentation have been disabled but you can view them all on the website tool, where they are archived sequentially to improve the clinical diagnosis and evaluation of children with muscle weakness.

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Sarepta Presents 48-Week Data For Duchenne's Drug At World Muscle Society ... - Seeking Alpha

Sarepta Presents 48-Week Data For Duchenne's Drug At World Muscle Society ... - Seeking Alpha | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it
Sarepta Presents 48-Week Data For Duchenne's Drug At World Muscle Society ...Seeking AlphaDuchenne's Muscular Dystrophy [DMD] is a genetic disorder that afflicts approximately 1 out of every 3,600 male infants.
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Poster Prizes Awarded at RTW

Poster Prizes Awarded at RTW | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Congratulations to the following Poster authors.

 

PPMD Prize – Emergency Alert Medical and Anaesthetic by Klair Bayley et al.

 

Nature.com Prize – Investigating the role of calcium signalling pathway associated with muscle maintenance in muscular dystrophy by Tanya Cully et al.

 

Elsevier Award – An open label clinical pilot study of resveratrol as a treatment for Friedreich ataxia by Eppie Yiu et al.

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Novel mechanisms underlying major childhood neuromuscular disease identified

Novel mechanisms underlying major childhood neuromuscular disease identified | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it
A study by scientists from the Motor Neuron Center at Columbia University Medical Center (CUMC) suggests that spinal muscular atrophy (SMA), a genetic neuromuscular disease in infants and children, results primarily from motor circuit dysfunction,...
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Major Poster Session Sponsor - PPMD

Major Poster Session Sponsor - PPMD | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Accepted poster presenters have all been notified. Take some time to inspect their poster gallery and attend the poster presentation session on Saturday to ask them any questions you may have.  We are indebted to PPMD for providing the major poster award - an invitation to speak in the USA at the stellar Connect 2013 Conference. Thank you PPMD and 'Mother Courage'.

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RAHZYchildren — Balloon Ball Birthday Pack to Win in the Raffle

RAHZYchildren — Balloon Ball Birthday Pack to Win in the Raffle | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

What child doesn't love a ball? RAHZYchildren has generously donated a Birthday Pack of Balloon Balls and bunting to our conference raffle. These ingenious textiles convert any balloon into a durable ball for children.  This is a collapsable ball yet nigh on impossible to break.

Thankyou Carolyn for your generous donation.

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Child Muscle Weakness recommended by Helen Posselt

Child Muscle Weakness recommended by Helen Posselt | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

This invaluable new site assists clinicians to understand the characteristics of muscle weakness in paediatric patients.

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Quad Bikes & Buggies on Show

Quad Bikes & Buggies on Show | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Luke Beechey is planning to exhibit bikes and buggies and share his experiences about PWD who have had some fun with his recreational wheels. Chat to Luke on the lawn.

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Sleep and respiratory care - Philips

Sleep and respiratory care - Philips | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Philips Home Healthcare help us to breathe easier with respiratory therapy and sleep solutions. Philips are amongst our premier line-up of services and equipment for persons with neuromuscular disorders.

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Genzyme Sponsor Gold on Gold Coast

Genzyme Sponsor Gold on Gold Coast | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

The conference partners wish to thank Genzyme for their generous sponsorship and for continuing to progress innovative treatments for rare disorders.

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Friday night social event - Book now!

Friday night social event - Book now! | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Delegates are warmly invited to attend one of our two social occasions running concurrently on Friday night. The Device Technology sponsored dinner at the University Club Restaurant, is a meeting place for sponsors, clinicians, exhibitors and speakers over a sumptuous three course meal, including choice of two mains and one free drink. Cost $52

Pizza in the Piazza is less formal but an ideal occasion for clients and their families to mingle and discuss their joys and challenges. This is a rare opportunity to meet our online peers from interstate and overseas, and also enjoy the company of new friends. Meet the conference organizers at this friendly event sponsored by PTC Therapeutics. MD Qld and DF stakeholders are looking forward to spending time with families and obtaining your feedback about information and services. At $15 per person, the family pizza night includes 4 pieces of pizza, salads and one free drink.

If you haven't yet registered online, please be advised that these are the only scheduled social events in the conference program but neither meal is covered by your registration fee - you must register for them separately. They are ideal places to catch up, conceived for you to network with your peers and share your stories.

We'd like everyone to give one of these networking events some thought this week before paying online so we can give our caterers a rough idea of numbers.

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The Ian Potter Foundation Funds Keynote Speakers

The Ian Potter Foundation Funds Keynote Speakers | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Last week, The Ian Potter Foundation, one of Australia's leading private philanthropic organisations, has assisted by providing some travel assistance for our Keynote speakers, Prof Kate Bushby(UK) and Pat Furlong (USA). This is a welcome boost to our conference budget since we are bringing double the number of overseas experts to share first-world advice and treatments with clinicians, therapists, carers and persons living with neuromuscular disorders. Thank you all those who carry on the aspirations and principles of Sir Ian Potter.

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Conference Photo Galleries Online

Conference Photo Galleries Online | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Thank you to Brett & Kelly Richardson and MD QLD for supplying some of these photos to commemorate a very educational national conference in Oct 2012.  The conference partners,  MD QLD and Duchenne Foundation,  brought you the best from around Australia and the world. It's up to you to use that information and those contacts to keep our sons and families as strong as possible. You are stronger than you know. Stay loved.

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MelissaRossman's curator insight, August 30, 2013 10:54 AM

beautiful

MelissaRossman's comment, August 30, 2013 10:54 AM
excellent
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The Psychology of Duchenne

The Psychology of Duchenne | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

While we wait for more print copies, you can download Jos Hendriksen's 80 page book in .PDF format from here: http://goo.gl/zhX12

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Duchenne With A Future: The Power To Live

A short compilation of the documentary "Duchenne With A Future: The Power To Live". A film about the success factors of living an adult life with Duchenne.

 

The whole documentary is available for free and you can write to Jos here for permission to use it:  hendriksenj@kempenhaeghe.nl 

 

People wanting the video are invited to donate a voluntary contribution to assist with expenses.

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Conference Evaluation Survey

Conference Evaluation Survey | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

We only received a small percentage of evaluation forms at the end of the conference.  Please pop onto our online evaluation form and take a few moments to give us some feedback.

Thank you for coming. We hope you learned as much as we did.

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DART Therapeutics Completes Study of New Biomarker for Duchenne Muscular ... - Sacramento Bee

DART Therapeutics Completes Study of New Biomarker for Duchenne Muscular ...Sacramento BeeCAMBRIDGE, Mass., Oct.
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Survey of attitudes to population screening for Duchenne

Survey of attitudes to population screening for Duchenne | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

The positive of an early diagnosis is that with informed consent and information, families can make choices in regards to their future family planning. Some families have been seen to have up to 6 boys/brothers with Duchenne in the same family before the first child was diagnosed with Duchenne.

 

Early treatments have seen boys with Duchenne over the last decade have a better quality of life.  With physiotherapy being an integral part of everyday life for families at home and the use of steroid therapy, splints and motorised early mobility aids such as scooters reducing day to day fatigue. 

 

There has never been more hope for the future of these children.

 

With medical science becoming ever closer to a 'treatment' for Duchenne an earlier diagnosis could mean earlier access to these treatments as they become available. What do you think?

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Local Potters Support RTW2012

Local Potters Support RTW2012 | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Original pottery by local artisans is up for grabs in our conference raffle. Many thanks to the Gold Coast Pottery Association and president Di Buckland for organizing these donations.

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Conference Raffle - a bit of Fun

Conference Raffle - a bit of Fun | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

This topaz jewellery was created by Geoff Robins especially for the conference raffle. More neat prizes have been donated by Kingfisher Bay Resort, Dragonfly & Micro Scooters, Waterloo Bay Lapiadary Club, Gold Coast Potter's Club, That's My Toy, Gatton Lapidary Club, St John's Ambulance, MD Qld, Greg & Cheryl Morrish, Jewellers & Metalsmiths Group of Qld, Gold Coast Entertainment books, John & Helen Posselt, DF and many more.

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Advanced Healthcare on Board

Advanced Healthcare on Board | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Looking For Health And Mobility Equipment? Advanced Healthcare is committed to excellence with value sourcing from the best suppliers in the world to develop a range of health and mobility equipment.

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Automobility - Vehicle Conversions

Automobility - Vehicle Conversions | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Automobility are on show at RTW2012. Automobility specialise in the conversion Kia Grande Carnival and Volkswagon Transport for wheelchair access.

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Ability in Motion - Gold Sponsors of RTW2012

Ability in Motion - Gold Sponsors of RTW2012 | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

A standing wheelchair is the "gold standard" for boys with Duchenne, eliminating the need for a standing frame. A Levo amounts to considerable personal and social cost savings in avoiding various other treatments and equipment items by delaying numerous cascading degenerative symptoms.

 

Used continually at all points of the day at will, the Levo Standing Wheelchair affords  the user both short and long-term benefits ranging from orthopaedic, therapeutic and pyscho-social to instantaneous comfort and independence.

 

Speak with Ability in Motion at the Conference Trade Show to be  irrevocably convinced!

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Nippy are Gold Sponsors - Specialists Airway Clearance.

Nippy are Gold Sponsors - Specialists Airway Clearance. | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

Both Nippy Clearway and Taleb Medical will exhibit the latest cough assist machine from the UK appproved for sale in Australia. 

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PTC THERAPEUTICS Silver Sponsor

PTC THERAPEUTICS Silver Sponsor | The Inside Scoop on our National Conference  Gold Coast Oct 4-6 | Scoop.it

PTC is a biopharmaceutical company focused on the discovery, development and commercialization of orally administered small-molecule drugs that target post-transcriptional control processes. Post-transcriptional control processes regulate the rate and timing of protein production and are of central importance to proper cellular function. PTC's internally discovered pipeline addresses multiple therapeutic areas, including rare genetic disorders, oncology and infectious diseases.

 

Ataluren, an investigational new drug discovered and developed by PTC Therapeutics, is a protein restoration therapy designed to enable the formation of a functioning protein in patients with genetic disorders caused by a nonsense mutation. A nonsense mutation is an alteration in the genetic code that prematurely halts the synthesis of an essential protein. The resulting disorder is determined by which protein cannot be expressed in its entirety and is no longer functional, such as dystrophin in nmDBMD.

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