The Huntington's Scene In  New Zealand

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Graham Taylor


Dear Friends,

For some time now I have been wondering why very few of the new families who contact the Christchurch HD Association through our Field Worker, or by other methods, are not coming along to our meetings, outings, etc although they all want to receive the newsletter.

I read Beryl Wright’s letter in the June newsletter with a feeling of deja vu - my husband was diagnosed as suffering from HD over 30 years ago, I though we were the only family in Christchurch in 1980 to form an Association and I have been on the committee since then.

As Beryl said in her letter, so much has changed over the last 18 or so years - and having the three Field Workers (Auckland, Wellington and Christchurch) has made a tremendous difference to our families and it would be a disaster if a time came when we could not raise the funds to employ them.

I wonder if the following supposition is the reason for the more recently diagnosed families not becoming involved. Back in 1980 (or thereabouts - the three Associations were formed within a year or two of each other) there was nothing for HD families. Most of us thought we were the only ones in NZ and like Wellington, at least 40 people turned up to our inaugural meeting and the looks of amazement on peoples’ faces when they realised just how many families had HD in Christchurch alone, was a sight to behold!

We soon learnt about the great work Marjorie Guthrie (widow of Woody Guthrie the famous American folk singer) had done in starting lay associations throughout America which were now spreading worldwide, and we knew if anything similar was to be started in NZ it was UP TO US. There was great enthusiasm at that time and nearly everyone wanted to be involved in getting an Association up and running. We all had, and still have, someone suffering from HD. (I am speaking for Christchurch, but I am sure the same happened in Auckland and Wellington).

Until 1993 our committee members (all family members) did their best to meet the needs of Christchurch families, to educate the ‘professionals’, raise funds and liaise with other Associations. When the opportinity came, by way of a small grant, to employ our own Field Worker for six hours a week, we realised how much more could be achieved by someone who was paid to devote six hours a week to HD families and who wasn’t as closely emotionally involved as we as HD family members were. When we subsequently received grants from the Lottery Grants Board and Trustbank we were able to increase the Field Worker’s hours to 10 per week and this seems to meet the needs at present. Most Christchurch families have been involved with Jaccy at one time or another, but they may not realise that it is through the work of the Association committee in completing applications for grants to pay the salary that we were able to employ our Field Workers. If there was no Association there would be no FIELD WORKER!

We also raise funds to help pay for young people from the South Island to attend the camps which have been held annually and run by Dorothy Tortell and her helpers from the Wellington Association. If there was no Christchurch Association there would NOT BE ANY MONEY AVAILABLE for this purpose and we feel it is vital for those who want and need to attend these camps to be helped financially if necessary. (See report from the camps in the June newsletter).

I could list many more IFs ... but I think you will have the gist by now!

I have been secretary/treasurer for 18 years; Mary Gilmour (our Chairperson has been on the committee for 14 ytears; and most our committee have been involved for a number of years. We are not getting any younger - and unless new family members become involved WILL THERE STILL BE AN HD ASSOCIATION IN CHRISTCHURCH IN SAY 10 YEARS TIME???

When an organisation is up and running the perception is that it will go on forever - BUT unless new people come forward with the same visision we had in 1980 - that may not be the case.

Have you been helped by a Field Worker employed by one of the Associations? Will there be a field Worker for those needing help (perhaps your family members) in a few years?

Now there doesn’t seem to be the following of "It all depends on US if we are going to have an Association". Every organisation needs some ‘new blood’ at times.Or are new people not coming forward because the existing committee is not providing what people want?

I would be interested to have other people’s thoughts on this and would like to see some letters in reply in the next Newslettter, either agreeing with me or putting forward other views, or suggesting how we can encourage new members.

In friendship

Judith Baker.

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