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Issue 91, December 2005

Guest Editorial

by Louise Boyle - Chairperson, HD Assn Christchurch

Shirley Ward, Community Liaison/Fieldworker, Christchurch, was privileged to be at the World Congress for HD held in Manchester, England in September. It was a stimulating, exciting event and she was able to bring back some resources for a small display at our own National Conference in Wellington.

She reported back that it was a wonderful meeting with superb speakers, presentations and stories. If you would like any information from the Conference contact Shirley or there is some very good material, which can be downloaded from www.hda.org.uk.

Continuing the theme of conferences, I have been pondering the nature and need of our own National conference.

Way back when Wellington were asking the other Associations if they would support the National Conference, discussion in Christchurch was - "do we really need a conference?" "With the website we can now easily get information and updates as they happen".

It is true that we live in a global village and information is only a website away.

However having just experienced my third National conference I can honestly say you don't get the emotion, the personal input and the questions answered the same as we do at National Conference.

Our Fieldworker was recently at the International Congress/Conference and good as it was, her remark was that the National Conference was far better; it was directed at families for the betterment of coping with HD and family life. It is also a time of unity for the HD community, for two days we are living within 'our HD world', protecting and supporting each other. It is a time for families to meet and a time for the three Associations to catch up with each other.

My husband has HD and his children are at risk. For us it was a comfort to have his young adult daughter present, who hasn't had much to do with HD and is at risk of having the gene. Her comment when we departed at the airport was "All these people and families with HD and they are just getting on with their lives". It's comments like this that make me realise how important the conference and opportunity for people to meet and share is.

Congratulations Wellington! Another well-presented conference with brilliant speakers, both international and national, I for one (and I'm sure the Christchurch Assn) will be supporting you with the next conference.

Best regards
Louise Boyle
Chairperson - HD Assn Christchurch

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