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13 Dec 2017

18th International meeting of the World Federation of Neurology Research Group on Huntington’s Disease

(28 to 31 August 1999)

13th International Meeting of the International Huntington Association

(28 August to 2 September 1999)
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Day three, the last day of the joint conference, began with ‘Understanding Challenging Behaviour’ from Dr Julie Snowden (UK) based on the CAP-IT test to measure damage to the brain cells and the difficulties the amount of damage causes for both patients and carers. Patience all round is the name of the game. Gerrit Dommerholt (Holland) then told us about progress in international development of associations around the world. I think we had three new countries represented at this conference, one of which was Brazil who with a population of 160 million only formed an association in 1997. Others were Russia, where the average wage is $US50 per month and Japan with a total of 393 known cases (0.72 per 100,000 population). Two Japanese doctors with one young association member sang a beautiful song as part of their presentation. They looked and sounded like teenage schoolgirls, very well presented to a very appreciative audience. We then had ‘Making Stone Soup’ which was an Australian offering and I think it was a skit on involving others to form group efforts.

Lunch came next, then a tourist ride across Holland to the venue for the second part of the conference. Holland is a beautiful country in early September, lovely countryside with lots of water, gardens and wonderful little villages with some very old buildings. The venue is called Landgoed Ehzerwold, not in a town and was originally built as a sanatorium then used for refugees and is now a resort and conference centre. Great place for a non-city person like me.


Morning tea was followed by an overview of the conference from Prof. Raymund Roos (Holland) which I have attempted to give you with the above. He then talked about Juvenile HD, i.e. under twenty years old and very rare, with unclear symptoms which makes it difficult to diagnose. There was then a discussion about systems and support for children and parents which seem to be more or less similar to ours. After lunch Ineke Lonink told us about the Dutch experience as an association which consists of lay people only, founded in 1976 with between 200-250 family members and now with 1400 members. They have a National Office with two staff in the Hague and have funding from the Princess Beatrix foundation and train lay people to teach clinical lessons to professionals. They also have a young peoples committee consisting of 20-45 members and a great deal of other financial support as the travel across Holland and the two days of conference at Ehzerwold, as well as the conference dinner for eight five of us were all paid for by sponsorship.

The rest of the afternoon was the International Huntington’s Assn. business meeting with election of officers to the Board which remains the same with the exception of treasurer, now Ron Livingstone of Scotland. Ralph Walker (Canada) was treasurer for twenty five years and has now been elected Honorary Member of the board in recognition of his contribution to the IHA. Minutes of the last meeting and financial statements were also read, explained and approved. The next international meeting is to be held in August 2001 in Copenhagen, Denmark.

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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

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