DOWNLOAD ALL RECORDINGS FOR
Huntington’s Australian
National Conference 2021
25 MAY – 1 JUNE 2021 | ONLINE DELIVERY
25 May – 1 June 2021
Huntington’s Australian
National Conference 2021
Huntington’s NSW ACT is very pleased to announce it will be hosting the next national HD conference as a series of virtual events from 25 May – 1 June 2021.
This conference was originally scheduled for November 2020 but was postponed due to COVID-19. Now it makes sense to go virtual as we have no idea when a real event might again be possible.
As a result of being virtual, we can bring you many more international speakers than we could afford to fly to Sydney for a live event, so we hope this is a small compensation for the mostly later in the day timing of sessions and for not all meeting physically together – always a preferable way to hold a conference.
Experience has shown that 2-hour sessions online with lots of time for questions are more digestible than sitting in front of a computer screen all day. Sessions will also be recorded so once you have registered, you can participate in your own time or re-visit them whenever you want.
We have decided to focus on four key themes:
- Achieving quality of care
- Achieving better policy outcomes
- Achieving better consumer outcomes
- Research update
Huntington’s NSW ACT would like to acknowledge with thanks the conference sponsorship provided by Roche and also the Commonwealth Government’s National Disability Conference Initiative for its grant. Also thanks to Novacorr for being an exhibitor. We are grateful to Bruce Hearn, Woody Guthrie fan extraordinaire for the introductory music at the start of each session.
Program
Tue 25 May
12 noon - 2 pm (AEST)
Thu 27 May
7 - 9 pm (AEST)
Sat 29 May
12 noon - 2 pm (AEST)
Tue 1 June
2 - 4 pm (AEST)
Tue 25 May
12 noon - 2 pm (AEST)
Day 1 – Achieving Quality of Care
Jimmy Pollard
Author of Hurry Up and Wait USA
Kenny Vuong
Physiotherapist formerly of St Joseph’s Hospital NSW Australia
Charlotte Hedegaard Hold
Occupational Therapist, Tangkær Care Home and Chairman, Danish HD Association
Denmark
Panel questions
What is quality care for people with HD?
How can we develop a model of care for all stages of HD?
What would constitute the training needs for a skill set that could provide quality care for a person with HD?
Thu 27 May
7 - 9 pm (AEST)
Day 2 – Research update
Dr Leora Fox
Assistant Director, Research & Patient Engagement, Huntington’s Disease Society of America (HDSA)USA
Dr Rachel Harding
HDSA Fellow Structural Genomics Consortium, University of TorontoCanada
Prof Clement Loy
University of Sydney and Westmead HD Service Australia
Dr Travis Cruickshank
Edith Cowan University WA Australia
Panel questions (panel to include Prof. Julie Stout)
What does the future hold in genetic research?
What about research into quality of life and quality of care?
Sat 29 May
12 noon - 2 pm (AEST)
Day 3 – Achieving better policy outcomes
Robert Fitzgerald AM
NSW Ageing and Disability Commissioner
Australia
Alistair Haw
CEO, Scottish Huntington’s Association &
Former National Care Framework Lead
Scotland
Lincoln Hopper
CEO St Vincent’s Care Services
Australia
Panel questions
Is residential disability accommodation a better solution than aged care for people with HD who need full-time care?
Tue 1 June
2 - 4 pm (AEST)
Day 4 – Achieving better consumer outcomes
Charles Sabine
Consumer and global HD spokesman UK
Rob Haselberg
Assistant Professor at Vrije Universiteit Amsterdam and HD+ person Netherlands (Holland)
Julie Burgess
Carer and Advocate Australia
Panel questions
How can families affected by HD be effective advocates for themselves and for the wider HD community?
How to get involved and also find others to become engaged?
Our Speakers
Julie Burgess
Carer
Tasmania
Julie is a family carer of and a passionate and committed advocate for a person with Huntington’s disease
Organisers
Conference Facilitator
Julie McCrossin AM
Julie is renowned across Australia for her warmth, humour, intelligence and commitment to social justice.
She has built a reputation for getting people talking with a clear focus and achieving positive results.
Conference Chair
Lewis Kaplan
Lewis has been CEO of Huntington’s NSW ACT since February 2019.
He has led a number of significant national and state NGOs.
His role as chair of this national conference has been supported by a conference committee.
Conference Committee
Prof. Clement Loy
Neurologist and Head of the Westmead Hospital HD Service
Prof. Dennis Velakoulis
Consultant Neuropsychiatrist specialising in HD, schizophrenia, epilepsy, multiple sclerosis and young-onset dementia
John Conaghan
HD Social Worker
Fiona Richards
Retired HD Social Worker
Jan Samuels
CEO, Huntingtons QLD
Craig Dalli
Board Director, Huntington’s NSW ACT
Frequently Asked Questions
Yes, all presentations will be recorded.
All registered participants will receive instructions on how to access the presentation recording.
No, you can spend as long as you like and / or only attend sessions that interest you.
The conference is free for people with HD, HD families and family carers. There is a modest registration fee for all other delegates.
There will be a question and answer (Q&A) tab on your screen which you can use to type your questions at any time. The conference facilitator will explain the use of this function.
The conference moderator may group questions to ensure as many as possible are addressed. However, if there are too many questions for the available time, written answers will be posted to the conference website.
Each speaker will take questions for 10 minutes at the end of their 20-minute presentation and after the three presentations in each session there will be a facilitated panel discussion for 30 minutes.
We have learned that sitting in front of a computer screen all day is not the best way to absorb information or engage with presentations. Shorter sessions are more effective.
We have aimed to accommodate both a mix of international speakers, so they don’t have to present in the middle of their night, and acknowledge the time differences across Australia, which is why there are no morning sessions.
Remember if the timing of a particular session doesn’t suit you, you can always view the recording at your convenience. Of course you won’t be able to ask questions if not live online.
DOWNLOAD ALL RECORDINGS FOR
Huntington’s Australian
National Conference 2021
25 MAY – 1 JUNE 2021 | ONLINE DELIVERY
Our Sponsors
Conference sponsored by
Roche Products
Conference supported by
Australian Government
National Disability Conference Initiative