Neuromuscular Information and Research Day 2019


The information day for 2019 was held at the Figtree Convention Centre on Saturday 31 August, 2019 and was attended by a bumper crowd. Check out videos of the talks below, there are 7 videos in total.

1. Sam Bryen presented on ‘Taking control of splicing: New therapies for neuromuscular disorders’. Sam is the current MDNSW PhD Scholar.

2. Clinical A/Prof. Alastair Corbett presented an ‘Update on Facioscapulohumeral Muscular Dystrophy & Myotonic Muscular Dystrophy’.

3. Shannon Finch presented ‘Understanding the Disability Royal Commission. Shannon is a M&A partner at Jones Day law firm, and Vice President of the MDNSW Board.

4. A/Prof. Kristi Jones presented ‘What has been achieved through MDNSW Bequest program. Kristi is the Head of Dept Clinical Genetics Children’s Hospital, Westmead (CHW), Lead Neuromuscular Clinical Trials Unit, CHW and Medical Director of MDNSW Board.

5. David Quach presented ‘Home Automation & Home Modifications – investigating options to increase independence.’ David is an OT at Aspire Rehab.

6. Peter O’Keefe presented ‘Planning for the future – experiences as a grandparent’. Peter is the grandfather of Patrick who has myotonic dystrophy.

7. Carolyn Campbell-McLean, Joe Iaquinto and Chris Suffield a panel discussion on the topic of ‘Living the Life I Choose – a panel of people with lived experience of neuromuscular conditions’.