Australian Huntington’s Disease Association (SA & NT) Inc.
Working towards a world without Huntington’s Disease
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“Working together towards
a world without
“To strive for the best possible quality of life for people affected by Huntington’s Disease and their families and carers though support, advocacy and education.”
Support: Provide support and information to enable people with Huntington’s Disease and their families to understand and cope with their illness and symptoms, facilitate support networks, operate social/therapeutic weekly programs for Huntington’s sufferers
Advocacy: Lobby for ongoing funding to maintain or expand the provision of services to people with Huntington’s Disease and their families & carers, fight discrimination agaisnt people “at risk”.
Education: Increase community awareness of Huntington’s Disease, provide relevant information to Huntington’s Disease sufferers and their famililies, provide training sessions for carers, health professionals and residential facilities, promote the Association through community participation.
Welcome to our website
The Huntington’s Association was established in 1978 to develop support and educational programs to help people understand and cope, and to give Huntington’s Disease families a single voice.
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The Association is managed by a board of Governance consisting of people from the South Australian business community as well as consumers of families affected by Huntington’s Disease.“Over 400 South Australians have Huntington’s Disease”
- Conducts a weekly Day Program for people with Huntington’s Disease.
- Has regular Carers meetings and retreats for families.
- Has Young Carers meetings and retreats.
- Has holiday camps for people with Huntington’s Disease.
- Holds seminars and family support meetings.
- Produces and distributes a wide range of printed materials on the many aspects of Huntington’s Disease.
- Conducts education forums for service providers.
- Distributes a quarterly newsletter, which informs families and health professionals of the latest developments in Huntington’s Disease research.
“Over 2500 more South Australians are at risk”
World Congress on Huntington’s Disease
Attendance at the Marjorie Guthrie Day on September 11, 2011 is free of charge for delegates representing IHA organisations & anyone interested in learning more about Huntington’s disease.
Join others from around the world to share & learn more about: Youth Living with HD- Coping Strategies – Starting a Family (IVF) – Accessing Community – Resources (Support Groups) – Relationships – Living with HD (Carers)
September 11-14, 2011 Melbourne Convention & Exhibition Centre AustraliaRegistrations will open March 2011.
Please register at www.worldcongress-hd2011.org
So What Is Huntington’s Disease?
Huntington’s Disease is an inherited brain disorder which affects individuals of either sex. It is caused by a dominant defective gene and any child of a person who has the faulty Huntington’s Disease gene has a 50% chance of developing the disease.
Symptoms can appear anywhere between the ages of 2 and 80, but more often between 30 and 45 years. Sometimes the gene has already been passed onto a new generation.
There are physical, cognitive and emotional symptoms of Huntington’s Disease. People usually experience short term memory loss and reduced ability to plan and organise. Emotional changes vary from person to person but may include depression, mood swings and accentuation of existing personality traits.
As the disease progresses the jerking twitching movements are more likely to increase and slurred speech and swallowing difficulties can develop.
People with Huntington’s Disease have at times been falsely assumed to be intoxicated because of their awkward gait and apparent clumsiness.
At present there is no treatment or cure of Huntington’s Disease.
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