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| Articles taken from the Dec 2003 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand |
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.
Regards
Louise Boyle
Christchurch HD Association
WELLINGTON NEWS
The Wellington Association is pleased to announce that we have employed another social worker to support families in the Wellington area.
Rae Sellens has worked for many years as a social worker and brings to the position a wealth of experience and knowledge. She will be based at our new office in Lower Hutt and can be contacted on Tel (04)569 3252, or on her mobile 021-344 445.
Dorothy Tortell will continue to work for the Association but will reduce her hours. Dorothy can be contacted either through the new office number Tel (04)569 3252, or on her new mobile on 027 444 0520.
Rae and Dorothy look forward to working together to improve the support we give to the HD community and health professionals in the Greater Wellington area and beyond.
Graeme Bradley
Chairperson
Wellington HAD
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
NEW ZEALAND
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 <info.wellingtonhda@xtra.co.nz>
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
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.
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
HamIlton
Ph. 07 839 5506.