Huntington’s Australian
National Conference 2021


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:

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.

Virtual meeting
young board members
Person using a computer


Our Speakers

Jimmy Pollard

Author of Hurry Up and Wait

Affiliated with Huntington’s Disease Society of America

Charlotte Hedegaard Hold

Occupational Therapist, Tangkær Huntington's Service, Denmark
and Chairman,
Danish HD Association

Tangkær, Denmark

Alistair Haw


Scottish Huntington’s Association, Scotland

Lincoln Hopper

St Vincent’s Care Services

Rob Hasselberg

Assistant Professor

Vrije University
Amsterdam, Netherlands

Robert Fitzgerald AM


NSW Ageing and Disability Commission

Charles Sabine

HD Advocate and
Emmy Award winning Journalist


Kenny Vuong

Head of Physiotherapy

Canterbury Hospital, NSW

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 Toronto,

Prof. Clement Loy

Director and Neurologist

Westmead Hospital, NSW

Dr. Travis Cruickshank

Neuroscientist and Researcher

Edith Cowan University WA

Julie Burgess



Julie is a family carer of and a passionate and committed advocate for a person with Huntington’s disease


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.


Huntington’s Australian
National Conference 2021


Our Sponsors

Conference sponsored by

 Roche Products

Roche Logo Blue 10mm for print 311745 (1)

Conference supported by

Australian Government
National Disability Conference Initiative