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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 two began with a research update/future therapies presented by Prof. Anne Young (USA). Although other cells renew themselves constantly, nerve cells don’t .The gene Huntingtin contains 3000 proteins, other genes have only 1000 so there is still a great deal of work to be done analysing their effects. Anne’s team has found that an HD mouse model injected with Tetracyclines reversed damage caused by the HD gene and are very excited about what they are seeing. Her advice is to stay active, positive and happy, to help delay onset and effects of the disease because, her words, ‘we are just so close to beating it’. Her husband, Dr John Penney, died earlier this year and was also on the research team in Boston so was a great loss to all of us.

Then came Dr Ira Shoulson (USA) with current therapies/Huntington’s study group CARE-HD using coenzyme Q10 600mls orally per day and Remacemide, RID-HD using Riluzole. These have been mentioned in our September newsletter. Morning tea was followed by an update on neural transplantation from Dr Marco Peschanski (France) who told us that after two years of a five year study there have been no adverse effects noted. This procedure is used with many safeguards, is still experimental and was described at the previous conference two years ago as well as our newsletter following that conference. Nothing really new at this time a they require five years to assess results. Dr Ken Barrett (UK) then described the role of the


psychiatrist and medications used for psychiatric problems, such as Venlafaxine, Sulpiride and Clozopine, which are used as little as possible and only short term. Thank goodness for the lunch break!

The afternoon session began with another neural transplant update – Capit HD from Dr Anne Rosser (Cambridge UK). They started assessing patients in 1996 when the use of foetal tissue was permitted with full consent and screening. Like all these procedures five years is required to assess results so should all know more in three years time. We than had a joint meeting with the WFN group describing models of care in the UK, USA, Australia, and Holland which included a video of life in a specialist unit in Holland, an overview from Jim Pollard (USA) and a discussion on the above.

Coping with challenging behaviour, also one of the topics, made me more fully aware that the world is really only one country and we are all trying our best to cope with the same things, although larger populations can obviously supply more facilities for specialised care and research. That closed work for the day and as my suitcase had finally arrived I went back to the Badhotel (I think it means bathhouse) to shower and change before being taken by tram to The Hague for a reception by the Mayor, Dr W J Deetman, and the conference dinner at the Pulchri Studio which is a beautiful, very old building now used mainly for art shows.

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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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