Report on the International Huntington’s Disease Conference held in Sydney in September 1997.
    Held in conjunction with the World Federation of Neurology Huntington’s Study group.
By Pam Chapman, Treasurer, Wellington HDA.

I was very fortunate to be able to go with Dorothy Tortell to the Conference. She had been to the Conference in Belgium two years beforehand, and had met quite a few people, and was in turn , able to introduce me to them. This certainly made me feel at ease at the conference and at the meeting afterwards. We met some wonderful friendly people.
    The main highlight for me was meeting so many people from professionals, care-givers, scientists, social workers and field workers, researchers to family members, all searching for ways and working towards improving the well-being and assisting with developing treatments, all with a common aim.
    Twenty three countries were represented with four days of conference with speakers from all over the world, meanwhile the scientists were holding their conference in the Ballroom next door. We met for morning and afternoon teas and lunch and also had a combined workshop. This was very important, especially I feel, for the families to speak to the professionals to give them a greater understanding of their needs. A further 1 1/2 days was held for delegates to meet and this I found really interesting. A full report is available and if anyone would like a copy, Please write.
    We have tapes available, and also a video of Dr Jane Paulsen, a Neurologist from USA who spoke very clearly on the behavioural aspects.
    Other speakers were Sue Watkins from England and Dr Steve Dunnett from Cambridge, Both of whom spoke at our Wellington Conference.
    Dorothy gave her paper on the Young Peoples Camp which created a lot of interest and many questions, particularly from some States in Australia. Other speakers were Dr Marcia McDonald, from Harvard Medical School. Dr David Crawford, Geneticist from England, and Dr Ira Shoulsh a scientist from USA.
    One day was taken up with speakers from various parts of Australia, and some from Germany,Russia,Scotland, Holland and Belgium decribing their special purpose-built homes and hospitals e.g. a renovated Childrens hospital cost three million dollars - government funded - I thought at the time, listening to the speakers, this really didn’t mean much to us, but - when soon after arriving home in Wellington and finding the one and only - Greytown Hospital - was closing down, - in retrospect I can see how proud these people are and they have every right to be - of there achievments and, they are fortunate, in most cases to have government funding.
    So to sum up I would say that it was probably the most interesting and thought provoking week I can remember and I feel privileged to have been part of it.
    The sharing of knowledge is the greatest key and this is exactly what is happening.

Pam.