PRELIMINARY CONFERENCE PROGRAMME
Thursday 16th April 2015
| 9.00am - 5.00pm | Registration Open | |
| 9.00am - 11.00am | Pre-conference Workshop: Exome Sequencing For Clinicians Click here for more information |
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| 11.30am - 12.00pm | Mihi Whakatau / Conference Opening | |
| 12.00pm - 1.00pm | Lunch | |
| 1.00pm - 1.30pm | Clinicians, Researchers And Patients Working Together To Achieve Better Outcomes For Patients, Ms Rose Wall, Deputy Commissioner Office of the Health & Disability Commissioner, New Zealand |
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| 1.30pm - 2.00pm | Achievements Of The ANN And Its Place In The World, Prof Kathryn North, Murdoch Children’s Research Institute, Australia |
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| 2.00pm - 3.00pm | The Network - Looking To The Future
2.00pm – 2.10pm: Clinical Care: Dr Alistair Corbett & Assoc Kristi Jones
2.10pm – 2.20pm: Diagnostics and Prevention: Prof. Nigel Laing & Dr Nigel Clarke
2.20pm – 2.30pm: Clinical Trials: Assoc Prof. Monique Ryan
2.30pm – 2.40pm: Advocacy: Mr Chris Higgins & Mr Phil Martin
2.40pm – 3.00pm: Panel
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| 3.00pm - 3.30pm | Afternoon Tea | |
| 3.30pm - 5.45pm | Early Career Researchers & Student Presentations
3.30pm – 3.40pm: Implementing The Care-NMD Survey
For Duchenne Muscular Dystrophy – The Australian
Experience, Ms Lyndal Douglas, Children’s Hospital at
Westmead, Australia
3.40pm – 3.50pm: Care NMD - Improving Care For New Zealanders Living With Duchenne Muscular Dystrophy, Ms Miriam Rodrigues. MDA NZ, New Zealand 3.50pm – 4.00pm: The MyLifeMyVoice.Org Teen NMD Study: Exploring The Health, Wellbeing And Health Care Engagement Of Adolescents Living With Neuromuscular Disease, Mrs Vivienne Travlos, University of Notre Dame, Australia 4.00pm – 4.10pm: Power Wheelchair Standing Devices - Researching The Impact On Everyday Life, Ms Helena Young, Children’s Hospital Westmead, Australia 4.10pm – 4.20pm: Duchenne Muscular Dystrophy- A Correlational Study Of Upper Limb Performance With Ambulatory Performance, Ms Joy Goubran, Royal Children’s Hospital, Australia 4.20pm – 4.30pm: Improved Diagnosis Of Congenital Muscular Dystrophy Through Next Generation Sequencing, Dr Gina O’Grady, Children’s Hospital at Westmead, Australia 4.30pm - 4.40pm: Leiomodin-3 Dysfunction Results In Severe Nemaline Myopathy Associated With Thin Filament Disorganisation, Mrs Micheala Yuen, Institute for Neuroscience and Muscle Research, Australia 4.40pm - 4.50pm: Expanding The Phenotype Of Gmppb Mutations, Ms Macarena Cabrera, Harry Perkins Institute for Medical Research, Australia
4.50pm – 5.00pm: Heterogeneity Of Charcot-Marie-Tooth
Disease Severity During Childhood, Ms Kayla Cornett, The
Children’s Hospital Westmead, Australia
5.00pm - 5.10pm: If The Shoe Fits. Weak Feet And Walking, It’s In The Shoes, Ms Rachel Kennedy, The Royal Children’s Hospital, Australia 5.10pm – 5.20pm: Development And Validation Of The Charcot-Marie-Tooth Disease Infants And Toddler Scale (CMTInfS) As An Outcome Measure For Disability, Ms Melissa Mandarakas, University of Sydney, Australia 5.20pm – 5.30pm: Smart Splints: The Future Of Lower Limb Orthotic, Hannah Jones & Ella Maisel, The University of Auckland, New Zealand 5.30pm – 5.45pm: Questions |
Genetic Health
3.30pm – 4.00pm: Genetic Health Service New Zealand; Who Are We And How Can We Help You? Rachel Pope-Couston, Auckland DHB, New Zealand
Essential Health (Heart & Lungs) for People Living with a Neuromuscular Condition
4.00pm - 4.30pm: Cardiac Care, Dr Warren Smith. Auckland DHB, New Zealand
4.30pm - 5.00pm: Respiratory Support For People Living With A Neuromuscular Condition, Dr Michel Toussaint, Rehabilitation Hospital Inkendaal, Belgium
Hands On
5.00pm - 5.45pm: Exercises, Stretches, Durable Medical Equipment
and other Physical Therapy Management, Dr John Klune
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| 5.45pm - 7.00pm | Welcome Reception | |
Friday 17th April 2015
| 8.00am - 5.30pm | Registration Open | |
| 8.30am - 10.30am |
8.30am - 9.00am: Adult Onset Myopathies
Dr David Hilton-Jones, Oxford Neuromuscular Centre, England 9.00am - 9.30am: Congenital Muscle Disease: The Congenital Myopathies And Muscular Dystrophies Dr Carsten Bonneman, Porter Neuroscience Research Centre, USA 9.30am - 10.00am: Spinal Muscular Atrophy and Pompe Disease: New Treatments for Paediatric NMDs Assoc Prof Monique Ryan, Royal Children's Hospital, Australia 10.00am - 10.30am: Prevention of Neuromuscular Disorders Prof Nigel Laing¸ University of Western Australia, Australia |
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| 10.30am - 11.00am | Morning Tea | |
| 11.00am - 12.30pm |
11.00am – 11.30am: Idebenone Reduces Loss Of Respiratory Function In Duchenne Muscular Dystrophy -
 Outcome Of A Phase III Double Blind, Andomised, Placebo-Controlled Trial (DELOS),
Assoc. Prof. Nuri Guven, University of Tasmania, Australia
11.30am – 12.00pm: Drisapersen: An Overview Of The Exon-51 Skipping Antisense Oligonucleotide Clinical Programme To Date In Duchenne Muscular Dystrophy,
Assoc Prof Kristi Jones, Children’s Hospital at Westmead, Australia
12.00pm – 12.30pm: An Overview of Prosensa /BioMarin Exon Skipping Technology And Its Application To Duchenne Muscular Dystrophy,
 Dr Anthony Hall, Prosensa Therapeutics BV, Leiden, Netherlands
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| 12.30pm - 1.30pm | Lunch & Poster Viewing GoBobyGo Car Development |
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| 1.30pm - 3.30pm |
International Collaboration
1.30pm - 1.50pm: Neurogenetic Disorders – The Need For International Collaboration, Prof Nigel Laing, University of Western Australia, Australia
1.50pm - 2.20pm: Networks for Neuromuscular Disease: More Than The Sum Of Its Parts Dr Carsten Bonnemann, Porter Neuroscience Research Centre, USA
2.20pm - 2.40pm: Development Of Standards Of Care In Myotonic Dystrophy, Dr David Hilton-Jones, Oxford Neuromuscular Centre, England (Sponsored by Julias Brendel Trust)
2.40pm - 3.00pm: RARE-Bestpractices: A Project To Systematically Collect And Evaluate Best Practice Guidelines For Neuromuscular Disorders, Ms Merryn Pearce, Murdoch Childrens Rsearch Institute, Australia
3.00pm - 3.30pm: Prof Kathryn North, Murdoch Children’s Research Institute, Australia
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Diet, Exercise & Complementary Therapies
1.30pm - 2.00pm: Diet & Living With A Neuromuscular Condition, Dr Zoe Davidson, Monash University, Australia
2.00pm - 2.15pm: Conductive Education For People With Neuromuscular Conditions: Goals And Outcomes Of Rehabilitation, Ms Lisa Gombinsky Roach, Integrated Neurological Rehabilitation Foundation, New Zealand
2.15pm - 2.45pm: Standard And Complementary Therapies And Physical Activity In Duchenne And Becker Muscular Dystrophy: Where To From Here? Katy de Valle, The Royal Children’s Hospital, Australia
2.45pm - 3.15pm: Exercise Considerations When You Have A Neuromuscular Condition, Dr Kristy Rose, University of Sydney, Australia
3.15pm to 3.30pm: Panel
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| 3.30pm - 4.00pm | Afternoon Tea | |
| 4.00pm - 6.00pm |
Respiratory Workshop For Therapists Working With People With Neuromuscular Disorders
Presented by Dr Michel Toussaint, Rehabilitation Hospital Inkendaal, Belgium
Facilitated by Rachel Philips, Starship Hospital, New Zealand
Case discussion is o major component of this workshop so if you have cases for review & discussion please send them to Rachel Philips in advance of the workshop.
Click Here for further Information
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Neuromuscular Research Foundation Trust Presentations
Chaired by Professor Larry Stern
4.00pm -o 4.10pm: Genome Screens For Disease-Causing Genes In Neurogenetic Disorders & The NZ NMD Registry Dr Richard Roxbourgh, Auckland ADHB, New Zealand
4.10pm - 4.20pm: A C. Elegans Mutation Screening Ppatform For Neuromuscular Condition , Prof. Russell Snell, The University of Auckland, New Zealand
4.20pm - 4.30pm: Manifestations of Neuromuscular Disorders in the Eye, Ms Hannah Kersten, The University of Auckland, New Zealand
4.30pm - 4.40pm: High concentration oxygen in neuromuscular disease , Dr Janine Pilcher, Medical Research Institute of New Zealand, New Zealand
4.40pm - 4.50pm: Functional Analysis Of Ryanodine Receptor Variants, Assoc. Prof. Kathryn Stowell, Massey University, New Zealand
4.50pm - 5.00pm: Autobiographical memory function in patients with cerebellum dysfunction , Dr Donna Rose-Addis, The University of Auckland, New Zealand
5.00pm - 5.10pm: Clinical trial of Zoledronic acid in children and adolescents with Duchenne muscular dystrophy, Dr Craig Jeffries, The University of Auckland, New Zealand
5.10pm - 5.20pm: Improving Allied Health And Nursing Outcomes Through Best Practice Guidelines For Duchenne Muscular Dystrophy, Dr Zoe Davidson, Monash University, Australia
5.20pm - 5.30pm: Prevalence And Impact Of Genetic Muscle Disorders In New Zealand, Dr Alice Theadom, Auckland University of Technology, New Zealand
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| 5.30pm - 6.00pm | Muscular Dystrophy Association of NZ Annual General Meeting |
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| 7.00pm - late | Conference Dinner | |
Saturday 18th April 2015
| 8.00am - 4.30pm | Registration Open | ||
| 8.30am - 11.00am |
8.30am - 9.00am: Every Person Has A Dream Nathan Basha, Australia 9.00am – 9.30am: Applying New Comprehensive Genetic Sequencing To The Diagnosis Of Neurological Disorders
Prof. Stephen Robertson, University of Otago, New Zealand
9.30am – 10.00am: Next Generation Sequencing For Neuromuscular Disease In A Diagnostic Setting - The Perth Custom Neuromuscular Gene Panel 2 Years On,
Mr Mark Davis, PathWest Laboratory Medicine, Australia
10.00am - 10.30am: Advancing Neuromuscular Research Using Zebrafish,
Dr Robert Bryson-Richardson, Monash University, Australia
10.30am – 11.00am: Unleashing Life: A Mobility Dog Partnership
Dr Michelle Smith, Mobility Dogs, New Zealand & Natalie Ramm, Mobility Dogs, New Zealand
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Commonly Used Clinical Assessments In Paediatric Neuromuscular disorders Workshop
Dr Kristy Rose, University of Sydney, Australia
Click here for further information
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| 11.00am - 11.30am | Morning Tea | ||
| 11.30am - 1.00pm | Transition Workshop
11.30am – 12.00pm: People With Chronic Conditions: Youth Development And Models Of Care – What’s The Evidence?Dr Simon Denny, Adolescent Physicians, Kidz First Centre for Youth Health
12.00pm – 12.15pm: Development Of A Transition Model Of Care For Adolescents With Duchenne Muscular Dystrophy At The Royal Children’s Hospital (RCH) Melbourne, Dani Villano, Neurology Department, The Royal Children’s Hospital, Australia
12.15pm – 1.00pm: State by State reports on the state of transition services. Questions and Discussion
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Emotional Impact Of Living With A Neuromuscular Condition
11.30am – 11.45am: Make A Wish, Debbie Hoskins & Louise Judd, Make A Wish Foundation 11.45am - 12.00pm: Bereaved Parents' Experiences Of Having A Child With Spinal Muscular Atrophy Type 1, Ms Emily Higgs, University of Melbourne, Australia
12.00pm – 12.15pm: The Frustrations Facing Families That Live With DMD, Kate Longmuir, The University of Auckland, New Zealand
12.15pm – 12.30pm: I Am Untouchable: Life Without Limits, Mr Richard Tamati, New Zealand
12.30pm – 1.00pm: Te Wa Aroha And Joshua – The True Meaning Of “A Time/Journey Of Love”, Jess Jamieson, Starship Children’s Hospital, New Zealand
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| 1.00pm - 2.00pm | Lunch | ||
| 2.00pm - 4.00pm | Diagnostic Challenges (open to clinicians & scientists – please bring your difficult to diagnose cases) | Tips and Tricks To Living With A Neuromuscular Condition
2.00pm – 2.15pm: The Experiences Of Young People With Neuromuscular Disease Participating In A Modified Duke of Edinburgh’s Program, Ms Mariam Farid, The Children’s Hospital at Westmead, Australia 2.15pm – 2.30pm: Sing For Fun- For Children With Muscle Disease, Ms Helena Young, Children’s Hospital at Westmead, Australia
2.30pm – 2.45pm: What’s It Like? Have Fun On Holiday!, Mr Roger Loveless, CCS Disability Action Waikato
2.45pm – 3.00pm: Managing Muscular Dystrophy Using Strength And Conditioning Principles, Mr Ayush Bhatnagar, New Zealand
3.00pm – 3.15pm: BODY + MIND + SPIRIT = Living The Life You Choose, Ms Narissa Wilson, Narie Creations, Australia
3.15pm – 3.30pm: Setting Up A Support Group, Talitha Vandenberg, New Zealand
3.30pm – 3.45pm Making A Difference: The Collaborative Way, Mr Roger Loveless, CCS Disability Action Waikato, New Zealand
3.45pm – 4.00pm: Discussion
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Allied Health & Nurse Alliance Workshop (open to Allied Health Professionals and Nurses)
Chaired by Dr Paula Bray
To provide one Australian voice for allied health, nursing care and research of patients with neuromuscular disorders.
1. Best practice guidelines
2. Mentorship
3. Training & Education
Click here for further information
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| 4.00pm - 4.45pm | ANN Oral and Poster Presentation Prize giving
Closing Address – Where To From Here, Dr Richard Roxbourgh, Auckland ADHB, Auckland
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