WORLD CONGRESS ON HUNTINGTON’S DISEASE... WITH A DIFFERENCE!!!

As some of you may have heard, the World Congress on Huntington’s Disease, which was scheduled to be held in Toronto, Canada, from 16^th-19^th August 2003, did not quite go ahead as planned. Unfortunately the massive power blackout that occurred in Toronto and-other parts of Ontario (Canada) and north­eastern USA on 14^th August resulted in the Congress being cancelled by the Marriott Hotel where the Congress was to be held. The hotel did not have full power or running water at the time the decision was made. But what do you do with 100 people who have arrived ready for a conference? You organize another one, of course!

 Saturday 16^th August was an extraordinary day for the conference organizers and members of the Board of the International Huntington Association.

 After trying to calm and reassure those who had managed to get to Toronto (mainly from Europe, UK, Asia, Australia and New Zealand), negotiations were held with the management of the International Conference Centre of Ryerson University, which was providing accommodation for many conference delegates. As the power situation had somewhat stabilized by then, it was agreed that the centre would provide a meeting room and meals for a 2 day conference to be held on Sunday 17^th and Monday 18^th August, with the IHA continuing to meet on Wednesday 20^th. They even agreed to provide a conference dinner for the Monday night!

 Obviously a new program had to be devised for the conference, and I’m sure you would have been impressed and proud to see the major role our Executive Officer, Robyn Kapp, played in this. Robyn found out who had arrived, who had brought a poster or an oral presentation, drafted a program which was revised and revised, again and again, as more people arrived and were willing to be included.

 Many of those who had brought a poster gave a brief talk about the poster, and we were able to put our posters on the walls of the meeting room. No one was deterred by the fact that the posters kept falling down while people were talking - we just stuck them back up and continued on! A data projector was obtained for the second day so things were almost normal! There was a relaxed, informal and collaborative atmosphere at the conference that reminded me of the International HD conferences I had attended years ago.

 It was unfortunate that we did not get to hear about all the research that is happening in the USA and Canada, as these presenters had been told the Congress was cancelled and therefore did not arrive. It was even worse for those who were in transit and could not fly into Toronto and/or heard the Congress was cancelled so had to turn around and go home. Although I had to land in Windsor (about 400 km west of Toronto) at least I did make it to Toronto, after a night in a blacked out hotel and a 4 hour bus ride! For those of us who attended the ‘revised’ Congress it was a memorable and worthwhile experience, and it also provided an opportunity for some of the younger researchers from countries like New Zealand to present their research by oral presentation rather than only by poster.

 I would like to thank all those who contributed to making the revised conference a success despite the setbacks, in particular Isla Horvath and Elaine Taylor of the Huntington Society of Canada, Christiane Lohkamp, Gerrit Dommerholt and Robyn Kapp of the IHA board, and the staff of the Ryerson Conference Centre in Toronto.

 Fiona Richards, Social Worker
Department of Clinical Genetics
The Children’s Hospital at Westmead
Reprinted: “Gateway”~ AHDA (NSW) Inc.
September/October 2003.

From Newsletter Australian H.D.A. (QLD) Inc December 2003