This is a very short history of the Australian Huntington's Disease Association in Victoria. It hopes to give you a quick overview of how the Association came to be formed, what the historical circumstances were and what motivated a group of people to come together with a mixed bag of ideas, hopes and fears.

If you are coming to the Association for the first time, either as someone who hopes to work for it, maybe as a paid officer, committee member or volunteer or someone interested in our organisation you will find it worthwhile to spend the time getting to know something of the circumstances which attended its birth and has nursed it into the maturity it has today.

Like many other conceptions, the exact moment cannot be pinpointed. There was a constellation, not of planets, but of circumstances.

A research project within the University of Melbourne's Psychiatry Department had run out of money. This research project had brought together members of related families who had not spoken to each other for years, families unrelated except for their concern about Huntington's disease (HD) and a group of professional people who had set up a HD Clinic to cater for the special needs of a very special group of people.

When it looked as if the first glimmerings of hope for a more optimistic view of HD were to be doused, the Psychiatry Department invited all the people it knew who had participated in the research, or were interested to come to an informal meeting to explain where the research was heading and what its staff were willing to offer for clinical care in the future.

This was towards the end of 1973, well before the idea of "self-help" groups had become common. None knew what to expect and the atmosphere at the beginning of the night was somewhat strained. Gradually, shy people felt comfortable enough to speak but the turning point of the night was when someone recognised a relative and a rapprochement between the two occurred. They hadn't spoken for years. A touching moment came when another relative spoke from the very back of the room, saying that she had always kept away from her husband's relatives because of her fear of HD. Now that she knew she had nothing to fear, she was determined to help whoever might need her in the future.

All these were good omens for the formation of a group which wanted to improve the knowledge about HD, help those affected by it and to put pressure on the Government to provide adequate funding for research and proper clinical care.

Quickly, publicity was organised about the loss of research funding, resulting in a magnificent private donation that allowed the research to be completed. Six months after the first meeting a constitution was adopted, a Committee elected and the AHDA was up and running.

From the beginning the Association was helped by its contact with Marjorie Guthrie in New York. She was the founder of the first HD organisation in the world (CCHD). Marjorie had identified the need for accurate and easily available information for specialists, doctors in general practice, and individuals, as being the most urgent need. The booklets printed by the CCHD were generously provided to us and these were modified to provide local information additional to the basic knowledge about the genetics of HD and its natural progression.

It was a time of great excitement. Associations were formed in other States, ideas fermented on many fronts. One of the earliest was an ambitious plan to set up a house for individuals with HD. We found that project beyond us, but twenty years later this dream has been realised most wonderfully.

A great success, a world first, which has been copied in many other parts of the world, was the organisation of the first holiday home plan for persons with HD. That was some week. The meals for the week had been cooked in advance by AHDA committee members. The "staff" who were volunteers and the "holiday makers" didn't know what to make of each other. By the second day everyone had the measure of each other and it was a great experience for everyone. Whilst the organisation of the "holidays" today may be different, the spirit is still the same.

By now we knew how important it was to have good friends. Friends who could put their hands on money, friends who could find a house for our holiday home, and friends, who could be called upon to work for the association, write letters, write newsletters and keep in touch with families. We also knew that we had to constantly widen our circle of friends as volunteers became weary or were overcome by the effects of HD.

Publicity was one way to attract new blood and big opportunity comes with the Australian premiere of the film "Bound for Glory". This was the story of Woody Guthrie, folk singer and hero of the poor immigrant workers in California. His widow, Marjorie came to Australia for the premiere and the Association filled the cinema for that night and, together with Marjorie, made the best of the publicity opportunities. Every opportunity was made to force the Federal and State Governments to take some responsibility for providing social work care for HD people.

Another great opportunity in advancing the understanding of the needs of people touched by HD, came with the making of the ABC's documentary television program, "Something In The Family" made in 1977. This was shown throughout Australia and aroused the imaginative concern of many people. Most importantly for Victorians, it aroused the concern of people within Wesley Central Mission. The entry of Wesley Central Mission into the field of nursing care became a turning point in the history of providing services for our group. Wesley finally bought a conspicuous mansion in splendid surroundings and converted it to a Special Nursing Home with 29 beds. The purchase made the headlines and knowledge about HD spread, especially about how to care for people with early and later symptoms, the need for special attitudes towards nursing, occupational therapy, stress management and much more. For the first time, articles appeared in professional journals reporting the experiences of therapists, nurses and doctors in this specific care area.

In 1979 the Association joined with Melbourne University and Wesley Central Mission in organising the 1st Australian Huntington's Disease Conference at which the main workers in the scientific and clinical field of HD were present. The Association supported the conference financially and with a group of volunteers made its running smooth and exciting. There were many touching moments: Marjorie Guthrie sitting with a women on the steps of the now Arthur Preston Centre giving support as only she knew how and a young marvellous-looking American scientist who was working on an animal model for HD. At the conclusion of a session, when a group of people had been explaining to the scientists assembled how they had faced the challenge of handling HD, he jumped up and said that he had never really realised the human significance of the work he was undertaking. He then said that he was more determined than ever that his research should go ahead as hard and as cleverly as he was capable. In 1996 he is still working on HD.

Two years after this conference, a grant from the Victorian Government (Health Commission) made it possible for the AHDA to make an appointment of a social worker and two years later an increase in the grant made the appointment of a welfare worker possible. Money was also found to pay part-time and finally full-time office staff.

Behind this last paragraph lies superhuman efforts of committee members of the AHDA: furious activity, which resulted in compelling State and Federal Government representatives to meet with us. Many were the heart-burnings; the complying with administrative and bureaucratic requirements which drove some to the point of collapse. Dedicated committee members who had to shoulder the main responsibility suffered "burn-out" and their personal lives were seriously affected.

What a difference there is today in the organisation. Responsibility is shared. Committee members are still asked to be dedicated to the aims of the Association and have to often work very hard, but they have lot of support. Social and welfare workers have the opportunity work within a professional framework; the Executive Officer and secretary have proper offices and equipment. All this has been possible because of the hard work and vision of the earlier workers, their failed experiments, their successful ones.

Today the AHDA operates out of its own premises, purchased with a substantial gift from a generous donor. It also manages a Community House in Glen Iris for those in early stage HD. Best of all, there are now four full-time social workers to provide a comprehensive support service to any person affected by HD in need and an embryonic volunteers programme.

The Association is committed to working with other neurological organisations to further improve access to services for all those in need.

Research into Huntington's disease has made great strides in the past two decades, highlighted by the discovery of the HD gene in 1993. The outlook for a cure or, more likely, medical intervention that will prevent or delay the onset of HD symptoms, is very good, with scientists talking optimistically of a five-year timeframe.