A Brief History Of The Association

In April 1975, nine people met at the Toongabbie Hotel, Toongabbie and formed a steering committee with a view to establishing the New South Wales Huntington's Disease (HD) Association. They contributed $75 to cover immediate expenses, and on 27 May 1975, the inaugural meeting of the Association was held at Lidcombe Hospital.

Discussion at that meeting included the social aspects of the disease, the inadequate facilities in Sydney, the lack of counselling and the fact that general practitioners were unable to make a diagnosis.

At the first Annual General Meeting, held in May 1976, a constitution was adopted, and the Association commenced activity as a purely voluntary body. Over the next few years various fundraising activities were conducted, a newsletter was started and the first information pamphlet was produced.

In 1980 we commenced advocating for a nursing home unit at Lidcombe Hospital for people with HD; although this did not eventuate, an HD clinic was established in 1982. Also around this time the first seminar for families and professionals was held as well as the first of what has proved to be a successful and continuing holiday camp program.

1983 was an important year for us as we were represented for the first time at an International Huntington Association meeting and Robyn Kapp was appointed as the first paid Executive Director, working from home for 12 hours per week. Initiatives over the next few years included awareness campaigns, day activity programs and representations to members of parliament.

In 1986 Robyn Kapp was elected to the World Federation of Neurology/International Huntington Association (IHA) committee for the formulation of predictive testing guidelines and to the IHA board . We have continued to play a leading part since that time in the affairs of both national and international HD organisations.

In 1987 we received a small grant from NSW Health to assist with administrative expenses and in the following year the first of what has been a recurrent grant was received. At this time, we moved our office to Lidcombe Hospital, receiving free rent and telephone calls and by 1990 we were able to employ our first administration assistant. Meanwhile, Lidcombe Hospital received funding for the nursing home unit, which opened in 1988.

In 1993 it was announced that Lidcombe Hospital was to close; this signalled a new beginning for the Association and people with HD, with the clinic being relocated to Westmead Hospital and the nursing home unit being established at Lottie Stewart Hospital.

1993 was a special year for the Association and people with HD as it was announced that the gene responsible for the disease had been identified; this immediately opened up new approaches to predictive testing and new avenues for research.

In 1996 we purchased a property at 21 Chatham Rd, West Ryde for use as a headquarters; this is known at Elsie Court Cottage after the benefactor whose bequest in 1991 made its purchase possible. In this year we also commenced our telemarketing program, an initiative that has strengthened the funding base and enabled new initiative such as our rural outreach program. In 1999 a major bequest for the purpose of research made possible our research grants program.

The Association continues to pursue objectives similar to those outlined in its initial constitution but with greatly expanded capabilities.

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