Official Opening of Huntington's Disease Awareness Week

Tuesday 8 September 2009



by His Excellency Dr Ken Michael, AC
Governor of Western Australia



Good morning everyone and welcome to this special event for such a worthy cause – the official launch of Huntington's WA Awareness Week.

As we have just heard from Professor Lyn Beazley, our Chief Scientist and Patron of this event, Huntington’s Disease is a genetic condition, and one that has severe health and life consequences for those people who suffer from it.

You may not be aware that in Australia, 7 to 10 individuals per 100,000 people will be affected with the disease. Here in Western Australia, Huntington's WA supports approximately 150 families, although the organisation is aware that there are many more families that are affected by Huntington's Disease.
 
The issues facing families with Huntington's Disease are devastating. Those with HD have difficulty in engaging with others in part due to the nature of their symptoms.

Research demonstrates that growing up in a family affected by Huntington's Disease impacts on a young person’s family life in respect of social, emotional and behavioural issues. Growing up knowing about the disease at an earlier age has shown that they cope better.

As we would all appreciate, education and information are of great importance in the way we deal with problems and issues that surround such conditions as Huntington's Disease. I am aware that Huntington's WA felt it was time to highlight these issues by creating an annual unique event that would bring it to the public’s attention. And I am pleased to add that who could do it better than schoolchildren – those who are taking part this morning?

With increased awareness, the organisation hopes to encourage the public to not only contribute to an extremely worthy cause but to empathise and support those families living with Huntington’s Disease.

So, this week, a range of activities have been organised both here in the city – with the wonderful visit to Scitech for instance last Sunday – and an awareness display in Bunbury later in the week, followed by a street collection on Friday.

Today, of course, we have a fantastic DNA challenge with school children from schools throughout the metropolitan area replicating a life size model of a DNA Double Helix. Congratulations and thank you to all the children taking part. It is so heartening to see your involvement this morning to give increased awareness and understanding of the impact of this debilitating disease. And what a colourful and graphic display we are privileged to witness!

I am aware that the call went out to schools to meet this challenge of forming the largest human representation of the Double Helix structure in Western Australia – and, I am told, perhaps even in the world!

So, well done to all the children, their teachers and their schools for coming forward to take up the challenge. It is such an impressive way to highlight the genetic nature of the disease and to raise awareness of the issues associated with those people at risk or diagnosed with Huntington's Disease.

I would like to commend and congratulate Huntington's WA for this very worthwhile initiative, one that hopefully will improve communication and knowledge about the disease, improve society's attitude towards it and towards those people who suffer from it; and, even more, perhaps result in more support from people willing to contribute in some way.

But we must not become complacent. It only takes a moment to reflect on the difficulties and sadness that some people face through diseases such as Huntington's. This moves and encourages all of us, strengthened by the bonds between us as a community, to support causes and organisations such as Huntington's WA. This support, in turn, will go a long way towards helping those families suffering from the disease.

I would like to thank the organisers within Huntington's WA for all their hard work in putting this week of events together. As well, I would like to thank the volunteers who have helped with the events as well as collecting donations. Your work and commitment are greatly valued by us all.

This is a unique and inaugural event with the children today, and next year, I understand, it will be duplicated in other States to mark Huntington's Awareness Week across Australia. That will be a wonderful development.

As you may know, Huntington’s WA is a not for profit organisation funded both by the State Government and by donations from the public. The organisation provides the only support service in WA for people with Huntington's Disease.

Indeed, its mission is to help people with Huntington's Disease to live independently for as long as possible. It is also to provide support for carers and families through a range of services that include connecting people to the services and support they need; supporting research; providing expert support for clients attending specialist HD clinics; and, such as this week's role, to increase understanding and knowledge of Huntington's Disease in the community.

Well done to everybody involved. This really is an outstanding event to raise awareness of the disease to attract more funding for research and improved support services in WA, as well as more compassionate community attitudes towards those with Huntington’s Disease.

On that note, I have much pleasure in officially launching Huntington’s WA Awareness Week and offer my very best wishes for a successful and rewarding week.