The Huntington's Scene In  New Zealand

Site Maintained by
Graham Taylor

Articles taken from the Dec 2003 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand

Canterbury    Wellington      Auckland/Northland     Waikato


It’s been a quiet quarter for Christchurch HD, the end of an eventful year.

Congratulations to Belinda and Nigel on the birth of their little girl.

We have been invited to participate in “Constructive Conversations”, a project run by the Social Science Dept of Christchurch University regarding “The Ethics of Genetic Testing”.  This is expected to happen sometime in December and is based around the intrusion that genetic testing has in our lives, ie life insurance application forms and in some countries career opportunities now raise the issue of genetics.

We had our end-of-year BBQ last Sunday.  Another really good occasion at Mary and Ashley’s.  Thank you for your beautiful garden.  The event provided a good opportunity to meet a new family coming to terms with Huntington’s.

The social occasions we hold are an excellent way to meet each other and sometimes find out more about HD and how other families manage.  You never know, you may learn something that will help you.  We are a support group and at grass-roots level these occasions are useful (and cost-wise we keep them as cheap as possible!).

We wish everyone a very peaceful Christmas and happy New Year.

Louise Boyle
Christchurch HD Association




Please note that the Wellington Association has a new postal address and telephone number with immediate effect.  All our mail should therefore be addressed to  :

PO Box 30 420
Lower Hutt

The new office telephone number for both Rae and Dorothy is (04)569 3252.  In addition, Rae Sellens’s mobile phone number is 021 344 445, while Dorothy Tortell’s new mobile phone is 027-444 0520. 
We also have a new email address which is  <>

 Auckland/Northland News

We wish you all Seasons Greetings - may your traditions and celebrations be enjoyed together with family and friends. And may the New Year bring continuing hope, meaning and magical moments as the months of 2004 unfold for each of us.

In the past three months the Association and the Field Officer have been busy with the challenges of the organisation as we endeavour to look ahead as well as deal with the present. Keeping abreast of the application of the health, disability and older persons strategies is necessary to ensure that the HD community has best access to a range of services. To this end the Field Officer networks, liaises and shares information with many levels of service providers. In this way some teamwork and support is sought for each person as they require input of a certain nature. The more we know of HD, the more we realise that people are very much individuals with individual family relationships and responsibilities. Strategies and solutions will therefore need to be individualised and remain flexible.

A survey sent to people with gene positive test results was not returned in sufficient numbers to make definitive analysis of their responses. But there were indications regarding the nature of HD Association services preferred:

         being on mailing list and receiving Newsletter

         having individual access to Field Officer

         participating in Auckland University research projects

         attending presentations on research and the gene positive groups We probably need to survey all people on the local mailing list to identify our best “way forward”. In the meantime the following programme has been made for 2004.

PROPOSED PROGRAMME FOR 2004 (Venue: 7A Taylors Road unless other indicated)

Field Officer at Office: Wednesdays 9.30 -12.30 or by appointment

Dargaville-Whangarei visits: February or March or as requested

Residential Care Staff Seminar: Thursday 11 March 9.30 -11.30

Saturday Seminars: with guest speaker and open to all to attend - 20 March, 11 September, 13 November 10.0 -1.00

AGM plus speaker: Saturday 26 June 1.00 - 4.00 Disability Resource Centre

Carers Seminar/support: Saturday 8 May, 25 September 10.00 -3.30

Gene Positive Group: Tuesday 27 April, 19 October 7.30 -9.00

Committee meetings: to be advised

Auckland University Research Projects

The Field Officer is the contact person for prospective participants looking to participate in current and future research projects. The researchers seek people who have been tested either gene positive or gene negative who are symptom free. There is also a need for people who may be experiencing early symptoms of HD, in particular those with a late onset. So set yourself a New Year’s resolution to be part of the great NZ research developments.

My personal greetings to those of you whom I have met and also those of whom I call associates. May the NZ summer holidays re-energise all of us.

Beth Gordon
Field Officer


Waikato News
Introducing our new Support Co-ordinator

Hi, my name is Liz Gordon and I have been appointed as Support Co-ordinator with MS Waikato Trust.  My initial appointment is for one year and will be reviewed at the end of this time.  I work part time and will be on board for two and a half days each week – all day Monday and Wednesday and half day on Fridays.   I will be providing support, information and home visits.   Having a well stocked library available is also part of our service to clients.

As a trained mature Social Worker I come with a background covering many aspects of living, working and assisting people in many ages and stages of life.  Working under the flag of MS Waikato is a new field for me and learning how best to deliver support services in this area for the benefit of all is an experience I am enthusiastic to be part of.  I look forward to meeting as many of you as I can over the next while.  You can contact me at:

MS Waikato Trust
P O Box 146
Ph. 07 839 5506.