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SCENARIO
Huntington Disease awareness campaign. 6 months travel around Australia on Harley Davidson motorcycles, creating awareness through schools, media etc. Various state AHDAs to co-ordinate fund-raising activities to co-incide with our travel. August 2000 to February 2001. Route heading in a northerly direction and travelling clockwise around Australia. WHAT IS HUNTINGTON DISEASE? Huntington Disease is a genetic, neurological disorder which effects motor skills, speech and temperament in sufferers. Symptoms usually begin between 30 and 50 years old and often resemble drunkenness. The disease was little known until the 1970's as many sufferers were mis-diagnosed, died from other causes before they developed symptoms or were kept under a blanket of secrecy. In 1993, predictive gene testing became possible for at-risk descendants and over 100 people in WA alone have discovered they possess the gene since 1993. This has left a large group of people out on a limb not knowing when, where or how badly they will become symptomatic. Nonetheless, because of this knowledge, people can also take planning for the future into their own hands both with regards to making the most of the now and preparing for what will come. There are approximately 6000 symptomatic people in Australia, hundreds who have been through the testing and countless more who are at risk. Being a genetic disease, Huntington's has implications for those outside the immediate family through relationships, children and so on. While foetal testing is available, that does have other implications for the parents. OBJECTIVES
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