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Three Generations of HD

Three generations of our family have been affected by Huntington’s Disease (HD). It began with our grandfather Albert, who was diagnosed with HD at the age of 38. Mary (his daughter) was diagnosed with HD at the age of 28 and Sharon (also his daughter) was diagnosed with HD at the age of 30. The most recent diagnosis for our family is our cousin Luke (Sharon’s son). In 2015, Luke received his results that he too had inherited HD. At the time that he received his results, he was 27.

When our grandfather Albert was diagnosed, there was very little information around, and given his later diagnosis, our family was already well under way. Being un-diagnosed led to unexplained behaviours and people drawing incorrect conclusions. Albert passed away in 1989.

At the age of 20, Lee (Mary’s eldest son), tested negative to the HD gene. Going through the genetic testing was confronting, but a necessary process for him. In Lee’s words it was like flipping a coin and having a 50/50 chance of receiving the gene or on the flip side, being HD free.

Mary stayed at home and was cared for by her partner Mick up until 2004, when it became difficult, both physically and emotionally to care for her at home. When Mary was in the nursing home, Lee visited her every day for 4 years, up until she passed of complications associated with having HD. She died at age 47 leaving behind her 3 children (Lee, Dean and Jasmine). As with Albert, to a complete stranger Mary’s behaviour was often mistaken. Sadly, many people judged with their eyes without knowing the reason for her involuntary movements and behaviour.

Our grandmother Doris, cared for Sharon at home until 2003. Doris continues to visit Sharon in the nursing home 2-3 times daily (and has done so for 15 years), to provide her with personal care, feeding etc, this in spite of Doris’ own ill health.

Along our HD journey, which spans 2 states (NSW & VIC) and 3 decades, we have been blessed to meet some amazing people, lifelong friends and we have a huge and varied support network – all of whom have become part of our extended family.

Our hope by fundraising is not only to raise money for the HD Association, but to also raise awareness within our network of family, friends, colleagues and the broader community. In our experience, unless you know someone who has HD, or a family affected by HD, it is not a widely known disease.

We can only hope that in our lifetime we see a treatment/cure become available and on offer to eradicate and put an end to HD, just as has been done with other previously ‘non-curable’ diseases.

Lee & Kirsty’s Team Heat raised over $12,000 for Huntington’s NSW ACT in the 2018 Walk4Hope.

Latest News and Stories

We are so close to merging into Huntington’s Australia

Published date: 14 September, 2023

We are now only a matter of weeks away from commencing business as Huntington’s Australia (HA). It has been an enormous effort from so many people to get us to this stage, where we are standing on the precipice of a new, interconnected, national approach to providing supports and services to the Australian HD community.

We are recruiting – Fundraising & Events Coordinator

Published date: 4 August, 2023

Huntington’s Australia is a national leader in the delivery of services to support and empower people impacted by Huntington’s Disease (HD) to live their best life. We provide NDIS services, community education, individual and group capability building activities and advocacy at all levels. As part of the Business Development, Fundraising and Partnerships Team this role ... Read more
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HD News Winter 2023

Published date: 31 July, 2023

Download your copy of HD News Winter edition by clicking on the link. Some of the highlights in this edition are Introduction to our HD Youth Specialist and program update, HD Awareness Month and the High Tea 4 HD, an update on the progress of Huntington's Australia, dates and registration details for Walk 4 Hope.
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We are recruiting – HD Specialist

Published date: 5 July, 2023

Huntington’s NSW ACT is the peak body representing the Huntington’s community in NSW and the ACT. We support people affected by Huntington’s Disease (HD) to live their best possible life, while striving to eliminate the factors that make our organisation necessary. We provide leadership in Huntington’s disease information, education, awareness, support and advocacy. 

Merger date delayed for Huntington’s Australia

Published date: 8 June, 2023

As a valued member of the HD community, we’d like to keep you up to date with Huntington’s Australia (HA) developments. A summary of the article: Our NDIS registration is taking longer than expected and as such the merger date of 1 July has been postponed. The different associations are working together to share resources ... Read more

An update on all things Huntington’s Australia

Published date: 29 March, 2023

As a valued member of the HD community, we’d like to keep you up to date with Huntington’s Australia (HA) developments. The merger implementation is in full swing and just about everyone is getting involved in some way, shape or form. All staff are in the process of having discussions with our CEO, Lenni, and our HR Specialist, Lyn, about transitioning into the new HA organisation. We are still expecting that most of the staff employed by State Associations will transfer to HA. In addition to our CEO, we now also have another two of the senior management team selected, and both are starting this month - Leah Atkinson as the Head of Finance and Corporate Services and Basil Mabuza as the Head of Community Programs and Services.