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

A note from the CEO's desk

As the not-for-profit sector continues to evolve, Huntington’s Victoria is prepared to meet its commitment to building greater awareness and improving the lives of those directly impacted by Huntington's disease. The Client support services and community engagement programs continue to grow in response to community demand and I look forward to reporting back to you our next newsletter.

In the last quarter, Huntington’s Victoria has recently made progress on a few projects. I am pleased to announce that Huntington's Victoria, in partnership with Professor Julie Stout and Professor Dennis Velakoulis, is in the early stages of developing a centralised national HD registry to ascertain the prevalence and psychosocial impact of HD across the Australian community. Due to the fact that there is no existing HD registry currently providing this essential information, in setting up the registry our objectives are simple:

  • Develop more targeted services
  • Implement localised capacity building
  • Reduce societal costs
  • Collect valuable data for scientific research

If you are interested in being a part of the registry and/or being kept up to date with its progress, please indicate your interest by emailing info@huntingtonsvic.org.au.

Furthermore, Huntington's Victoria, in collaboration with the Melbourne Neuropsychiatry team at the Royal Melbourne Hospital, have taken steps to extend its existing model of care to include knowledge and expertise from across Australia and the world. With this in mind, Huntington’s’ Victoria will lead an international scoping exercise of existing models in developing a standardised model of care specific to the needs of the HD community across the life span. I look forward to providing ongoing progress reports to you on both the registry and the model of care in the near future.

In continuing to build awareness and advocate for our community, Huntington’s Victoria has recently reviewed its current avenues of communication. Accordingly, the organisation has recently updated its website and information sheets to ensure accessibility of information. We have also had three films produced with an emphasis on HD Awareness, Becoming a HD Champion, which will be aired on SBS, and Stop HD through PGD, a call to action to enable financial access to PGD for all HD families.

During this quarter I was also privileged to attend the 31st Annual HD Convention in Baltimore on June 2-4. I would like to take this opportunity to thank our colleagues at the Huntington's Disease Society of America as well as the American and Canadian HD communities for making me feel so welcome. I was extremely impressed by how innovative and industrious the attendees were in raising awareness and making a difference to the everyday lives of Americans impacted by HD. As promised, I took particular note of the sessions related to research and was enormously heartened to hear of the progress being made. I would encourage you to refer to the HDbuzz presentation (The Best Time to Plant a Tree: a Global HD Research Update) on the HDSA website for further details.  I look forward to continuing to work in partnership with the Huntington's Disease Society of America and the Huntington's Disease Society of Canada, whose generosity and eagerness to collaborate is much appreciated. 

national youth alliance
Tammy and the National Youth Alliance Team

hdyo
Chandler Swope (HYDO), Tammy (HV) and Dr Edward Wild (HDBuzz)

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