1800 244 735

Helpline (02) 9874 9777

A 4000km cycle to Broome

Bill and Erica are travelling to Broome: Bill will be cycling and Erica be driving as his support person. They are leaving very shortly and are aiming to make it to Broome, over 4000km away, by June. Whilst on this journey they are raising much needed funds and awareness for Huntington’s NSW ACT.

To donate to Erica and Bill’s Cycle 4 HD please click here.

Q. Why is Bill doing this cycle ride?
Bill’s reason for the trip is to celebrate his 70th, and finish a circumnavigation cycle trip he started 20years ago!

In 2000, when living in the Blue Mountains, Bill cycled down south to Ballarat staying with friends, across to Adelaide to visit more friends, and then over to Western Australia, catching up in Perth with me when I flew over for my annual holidays. From Perth we cycled together up to Kalbari and then I had to return to work. Bill ventured on as far as Broome, but being from Scotland, the heat got to him and the fun of the Olympics called, so he headed home to join all the festivity in Sydney.

Q. Where else has cycling taken you?
This is not the first time Bill and I have been on grand cycling adventures. We have completed three 1500km trips in Europe, cycling from Munich to Berlin, another down to Budapest and up through Poland and a third trip to Berlin, one of the best places in the world to cycle.

I have also completed two international fundraising rides for Community Aid Abroad: one in Vietnam and Cambodia, and another in Sri Lanka.

In addition, along with our friends in Wollongong we have completed multiple, self supported, two week cycling trips around country areas in NSW, Victoria and Tasmania.

Q. Why have you chosen Huntington’s as your charity?
I became aware of Huntington’s NSW ACT when my dear friend of almost 60years, Lynne, was diagnosed with Huntington’s disease. Over the last 10 years, I have seen how the disease has impacted on Lynne’s life. Lynne is a very private and independent person, and the slow loss of her independence, such as giving up her car, hit hard. Lynne is well aware of the road ahead. She completed her nursing training at Royal Prince Alfred Hospital in 1971, and interestingly most of her work was in Neurosurgery and Neurology, so Lynne has a good understanding of what was ahead. Importantly, Huntington’s NSW ACT has been a great support to Lynne.

 

Latest News and Stories

donate scene cartoon

We are recruiting – NDIS Support Coordinator

Published date: 3 April, 2023

Huntington’s NSW ACT provides services and advocacy to improve the lives of Australians impacted by Huntington’s disease and other disabilities under the National Disability Insurance Scheme (NDIS). Under the banner and leadership of Huntington’s NSW ACT, this role works with the Huntington’s Queensland team, to provide support to people with Huntington’s disease (HD) in Queensland, to activate and manage their NDIS plans and engage with a range of mainstream and disability providers to optimise outcomes and achieve their NDIS plan goals.

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.
HD news image

HD News Autumn 2023

Published date: 23 March, 2023

Download your copy of HD News Autumn edition by clicking on the link. Some of the highlights in this edition are: Introduction to our counselling service Youth education scholarships Appointment of a CEO for Huntington’s Australia We hope that you enjoy this edition of HD News. If you have any feedback or would like to get in ... Read more

Ailsa’s Legacy – HD Education Scholarship

Published date: 17 March, 2023

We are excited to announce that applications for the 2023 Ailsa’s Legacy Youth Scholarships are now open and invite all children and young people in our HD community needing assistance to start, continue, or return to education in 2023 to apply. We have a number of individual grants available this year of up to $2000 each for children and young people living with an HD affected parent or carer. These grants can be spent on anything that makes accessing education easier and more likely such as course or school fees, uniforms and shoes, computers, IT and software, school camps, school sports, extra tuition, extracurricular activities, transport, accommodation, and more.
lady doing an announcement

NAA pre-budget submission for the 2023-24 Federal Budget

Published date: 6 March, 2023

The Neurological Alliance Australia * (NAA) is pleased to provide a pre-Budget submission to the Australian Government for the 2023-2024 Budget. This submission focusses on four key areas that will impact people affected by the conditions represented by the members of the NAA.

HD Heroes book release

Published date: 6 March, 2023

Huntington’s Disease Heroes includes stories from a scientist who switched from cancer research to studying Huntington’s after finding out her mother had tested positive for the disease, a young man whose biggest fear was testing gene negative and not inheriting the disease, and a woman who grew up in survival mode, unable to express her grief. We learn about the ways their lives are better off because of the hardships they have faced. By sharing these intimate parts of their lives, they are taking away the fear and stigma of living with Huntington’s in their families. They are giving a voice to this unheard rare disease community and empowering others to speak up.