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Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

A note from the CEO's desk

As I sit at my desk to write this report, I cannot believe that we are already in July. I hope you are all staying warm over this winter period and drinking plenty of hot chocolate. Since our last newsletter HV continues to focus on improving services in order to continue to meet the needs of our community and implement strategies to increase overall awareness. With this in mind it is with great pleasure that I can announce that the Australian Council on Health Care Standards, Australia’s leading independent authority on health care has recognised Huntington Victoria for the high quality care provided to the HD community. 

HV has been awarded a full accreditation through EQuIP5 standards and the Human Services Standards. Equip5 is a rigorous, consumer focused programme which measures how effective an organisation is with respect to the provision of care and services. We were also delighted to achieve for the first time three Extensive Achievement (EA) honours in the following criterion:

  • Promotes better health and wellbeing of the HD community   
  • Committed to community participation in the planning delivery and evaluation of service delivery.
  • Committed to ensuring community members are aware and informed of their rights and responsibilities.

I would like to take this opportunity to personally thank all involved in the accreditation process, including staff, HV board and our community for their invaluable contributions, not only during the assessment and evaluation process, but also for their ongoing support and commitment to Huntington’s Victoria.

HV celebrated the completion of the accreditation process by launching the Inaugural Huntington’s Awareness Month which included the “Let’s Talk about HD” and ‘Light it Up for HD’ campaigns in collaboration with Huntington’s Canada and Huntington’s USA. The Light it Up for HD campaign saw the Melbourne Town Hall lit up in blue for this event.  This was such a successful campaign and we look forward to your participation and innovative ideas for next year.

On the advocacy front, your support of the ‘Stop HD through PGD’ campaign has been invaluable in assisting the current application before the Medical Services Advisory Committee (MSAC) to have PGD recognised and funded under Medicare. I have been advised by MSAC that the application was considered during a meeting in April and we are awaiting the outcome.

 I was also recently invited to meet with Go Gentle Australia’s representative Andrew Denton to discuss the findings of the Parliament of Victoria’s Inquiry into End of Life Choices (2016) and the Assisted Dying Legislation that is currently being considered. Go Gentle Australia are interested in seeking the view points of the Huntington’s community. If you are interested in finding out more about the Assisted Dying Legislation or contributing towards the campaign please visit http://www.gogentleaustralia.org.au/ or contact me directly on (03) 9818 6333.

Our HD Champions continue to be integral in helping to build greater awareness of HD in their own communities and therefore I would like to acknowledge the following community members for their continuing commitment to raising awareness of HD:

·         The Hunters who once again took part in the gruelling Murray to Moyne Cycling event supported by members of the HD community across regional Victoria.

  • Darren Pearce and Kylie Hales who in collaboration with HV hosted a “Dance Fitness for Huntington’s” which was attended by over 200 people from across the HD and broader community.   

Before I sign off, I want to remind you to keep your diaries free for two upcoming events

  1. HD community day that will be at the start of September and run in collaboration with our HD researchers
  2. Huntington’s Victoria Gala Ball for the 14th October 2017 at Zinc. Tickets are already on sale.

Tammy Gardner
CEO, Huntington’s Victoria

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Accredited by the Australian Council on Healthcare Standards until 15/07/2017

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