1973

Formation of Australian Huntington’s Disease Association Victoria. The organisation becomes the first of its kind in Australia and the third internationally.

1976

First Family Retreat was held in Torquay, providing short-term relief to families affected by Huntington’s Disease. This retreat becomes the first of its kind in the world.

1977

Sponsored the premiere of the film “Bound for Glory” at Rivoli Theatre in Camberwell. The film is based on Woody Guthrie’s autobiography. All proceeds from the premiere and a Woody Guthrie album went to the Australian Huntington’s Disease Association Victoria.

1978

The organisation secures its first office space on the 15th Floor, 60 Albert Rd, South Melbourne.

1979

Hosted the first Huntington’s Disease Conference in Australia in collaboration with the University of Melbourne and Wesley Central Mission.

1981

Received the first successful State Government Grant allowing the organisation to employ a Welfare Officer.

1983

Adopted the International icon for Huntington’s Disease, the amaryllis.

1985

Received the first successful State Capital Government Grant for a Group Residence at Jellicoe St, Box Hill South.

1986

Recognised as a service delivery agency, allowing for the employment of full-time welfare workers, a part-time office worker, and a part-time bus driver.

1993

Australian Huntington’s Disease Association Victoria turns 20 years old.

1995

Tomasetti House, a group residence, is built with the generosity of the Tomasetti family at 5 Summerhill Road, Glen Iris.

1995

AHDA purchases a property at 607 Warrigal Rd, Ashwood, becoming the association’s home until 2009.

1996

AHDA publishes its first article, “Huntington’s Disease: An Update,” in the Australian Social Work Journal.

1997

Released the first documentary in Australia on genetic testing, titled “Freedom of Choice”.

2000

Launched the HD Awareness Road Show, covering 31,000kms and educating the community about genetic testing and the impact of Huntington’s Disease.

2004

Inaugural National Huntington’s Disease Awareness Day.

2004

Published Working Papers on Huntington’s Disease & The Existing Service System in Victoria.

Published “Kaleidoscope” with funding from Ivy Ayris and Norman Gunn bequest.

2006

Received a one-off grant for the Flexible Support Package Pilot funding from the Department of Human Services.

2006

Hosted our second National HD Conference in Melbourne with the theme “Another piece of the puzzle.”

2007

Restructured AHDA into Support Services, Service Development, and Consumer Advisory Committee.

2007

Received state government funding for the first HD specific Individualised Support Packages.

2008

Rebranded as Huntington’s Victoria, launching a new website and logo.

2010

Relocated to new premises in Hawthorn, chosen for its central position and proximity to public transport, freeway access, and HD specialist clinic locations.

Huntington’s Victoria presented 3 papers at the 6th International Conference on social work and mental health in Dublin. The name of the papers were: Innovative approaches to care a model of service delivery within a regional context of practice, and “Can case managers continue to meet the needs of the client within parameters set by the current international economic climate?”.

2011

Melbourne hosted the World Congress on Huntington’s Disease. Huntington’s Victoria was a member of the organising committee and hosted the Family Day in line with this congress.

Huntington’s Victoria hosted the Inaugural International Allied Health Network Meeting.

Huntington’s Victoria hosted The Behavioral and Psychological Symptoms of Huntington’s Disease book launch.

Huntington’s Victoria was invited to the Community Cabinet. Huntington’s Victoria had the opportunity to meet with Prime Minister Julia Gillard, the Minister for Families, Housing, Community Services & Indigenous Affairs, the honourable Jenny Macklin and the honourable Bill Shorten. Issues raised and discussed included the following:

• Inclusion of representatives from the neurodegenerative community in the discourse in relation to the National Disability Insurance Scheme (NDIS)
• Funding limitations in relation to IVF Pre-Implementation Genetic Diagnosis (PGD).
• Early access to Superannuation.
• Early access to superannuation for those under the age of retirement incurs a tax fee.
• Pre-implantation Genetic Diagnosis (PGD)

Innovative approaches to psychosocial care with clients affected by Huntington’s disease: A model of service delivery within a community context practice.

2012

Huntington’s Victoria hosted the inaugural Annual Gala Ball.

Huntington’s Victoria was invited to attend a round table discussion with Senator the Hon Jan McLucas, Parliamentary Secretary for Disabilities & Carers, with other peak bodies regarding the National Disability Insurance Scheme.

Huntington’s Victoria became a proud financial supporter of HD Buzz and HDYO.

Huntington’s Victoria launched an e-newsletter, Facebook and Twitter accounts.

2013

Accredited by the Australian Council on Healthcare Standards for the first time. 

Provided NDIS services and participated in the NDIS Pilot Program in Barwon.

2013

Launched the Huntington’s Community Conference, inspired by the 2011 Huntington’s Disease World Congress Family Day.

2017

Joined the global “Light It Up 4 HD” campaign by lighting up the Melbourne City Town Hall in Blue, being the first Australian Huntington’s disease association to take part.

Launched “Move 4 HD,” a dance initiative celebrating a person’s ability to move and participate.

2019

Launched the “Go Blue 4 May 22” campaign to build awareness of Huntington’s disease.

2020

Awarded an NDIS ILC Grant for “Huntington’s Community Connect” an online peer-to-peer forum.

‘Huntington’s Community Connect’ Part 1: Gap Analysis Report. The Gap Analysis Report published in collaboration with Monash University highlights prevalence of Huntington’s disease, relevance of social impact domains and gaps identified by focus group.

2021

Published an article “Co-Design of Social Impact Domains with the Huntington’s Disease Community” that focuses on addressing the support needs of individuals affected by Huntington’s Disease to enhance their quality of life. Recognizing significant gaps in services and knowledge related to Huntington’s disease, the research aims to measure unmet needs and define quality of life through the development of HD Social Impact Domains (HD-SID).

2022

Launched “Huntington’s Community Connect“.

2022

Adjudicated an Enablement Award for The Most Outstanding Specialist Community Organisation.