ANN 2023: Scientific Programme

Full Programme:

Wednesday 24th May 2023 (Surfair Conference Centre)

(Registration open from 2pm until 6pm)

1400-1600 Future Planning Meeting (all welcome)

1600-1700 Gene Therapy Panel Discussion – Setting up a site for gene therapy.

1800 to 1930 – Welcome Canapes (Surfair Conference Centre)


Thursday 25th May 2023

0800-0845 AHNA breakfast meeting (Surfair Conference Centre)

0745-0900 Registration (Breakfast is provided for all delegates)

Session 1: Chairs: Dr Kate Carroll & Dr Gina O’Grady

0900 Welcometo ANN 2023 – Dr Ian Woodcock and Dr Anita Cairns

0910 What’s new for the limb girdle muscular dystrophies? – Prof. Volker Straub

1000 Rapid fire presentations (supported by travel bursaries from Pfizer):

  • Candidate biomarkers of disease onset and progression in individuals with ≥3 copies of SMN2 – Lakshimi Balaji
  • Quantitative muscle ultrasound in adult spinal muscle atrophy – A preliminary report – Luciana Pelosi
  • Fishing for a cure for collagen VI congenital muscular dystrophy – Avnika Ruparelia
  • Hypogammaglobulinemia and infection risk in myotonic dystrophy type 1 – Katrina Morris
  • Duality of the FHL1 gene in myopathy and exercise performance – Meagan McGrath
  • Measuring function in childhood FSHD – Does the FSHD-COM Peds make the cut? – Katy de Valle

Morning tea 11.00-11.30

Session 2: Dr Matt Lynch & Ms Daniella Villano

1130 Speech and Swallow in Neuromuscular Disease – A/Prof. Katlyn McGrattan

1150 Titin: an emerging “titan” of the skeletal and cardiac muscle disease world – Dr. Emily Oates

1205 Australian Neuromuscular Disease Registry Update – Ms. Robin Forbes

1220 Screening for Neuromuscular Disease – Prof. Nigel Laing

Lunch 13.00-13.45

Session 3: Theme – Consent/ethics – (Facilitated session by Prof. Lynn Gillam RCH Bioethics)

  • “Equality, diversity and inclusion in DMD” – Prof. Volker Straub
  • Ethical Case Study – Dr Anita Cairns
  • Equitable Access to “competitive” clinical trials in DMD: considerations for researchers – Dr Helen Young
  • “Inferred Ought and the Committee of Five” – Ms. Robin Forbes and Dr Ian Woodcock
  • How do we select patients for gene therapy studies / Managing patient expectations group discussion facilitated by Prof. Lynn Gillam

Afternoon tea 15.15-15.45

Session 4: A/Prof. Kristi Jones & Dr Kristy Rose

  • 1545 Summary of Pre-clinical research – Dr Peter Houweling
  • 1600 Steroids and Beyond – Update in clinical trials – DMD – Dr Michelle Lorentzos
  • 1615 Update in clinical trials – FSHD – Dr Ian Woodcock
  • 1630 Update in clinical trials – CMT – Dr Eppie Yiu
  • 1645 Update in clinical trials – Adult Perspective – Dr Anthony Winkle

ANN Annual General Meeting 1700 to 1800 (Surfair Conference Centre)

ANN 2023 Conference Dinner – 1900 to 2300 (Off Tap Tapas, Marcoola)


Friday 26th May 2023

0800 – 0845 Breakfast Symposium – Sponsored by Novartis (Breakfast is provided for all delegates, but due to Medicines Australia rules, members from Parent Advocacy and Support Group are not able to attend this symposium)

Session 5: Chairs Nigel Laing & Dr Paula Bray

0900 Unravelling the pathogenesis of a new form of skeletal myopathy – Prof Volker Straub

0940 Rapid fire presentations (supported by travel bursaries from PTC):

  • Managing capacity and demand in a busy Neuromuscular Clinic – Nicole Thomas
  • Improving the transition journey for neuromuscular patients in Queensland – Rebecca Leung
  • Implementing clinical guidelines for neuromuscular disorders – Rachel Kennedy
  • Healthcare Experiences of people living with Myotonic Dystrophy Type 1 – Karen O’Maley
  • Bladder and Bowel dysfunction in children and infants with Neuromuscular Conditions – Megan Reading
  • Lung volume recruitment therapy in people with neuromuscular disease: a randomised controlled trial – Nicole Sheers

Coffee break 10.40 – 11.00

Session 6: Chairs Penny Deavin & Ms Miriam Rodriguez

1100 Tweaking the current SMA arsenal – Prof. Basil Darras

1120 Neurogenetic Research in New Zealand– A/Prof. Richard Roxburgh

11.35 ADAPT-CMD: the Australian functional Diagnostics platform for Advancing Personalised Treatment of Congenital Muscle Disorders – Prof. Catriona McLean

11.50 Update on Myasthenia – A/Prof. Stefan Blum

1215  Transition Panel Discussion – Dr. Anita Cairns, Dr. Ravindra Urkude, Dr. Cullen O’Gorman

13.20 Closing Remarks (Dr. Anita Cairns & Dr. Ian Woodcock)

1330 Conference Close