The Huntington's Scene In
New Zealand
Site Maintained by
Graham Taylor
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| Articles taken from the March
2004 Huntington's News. The Quarterly Newsletter of the Huntington's Disease
Associations of New Zealand |
The Newsletter has a change
of editor with this edition, so I would like to thank Mary Hiron for her valuable
contribution to the “information” distribution. It is an opportunity to also
acknowledge the commitment shown by the Editorial Board and to Graeme and Elaine Bradley
for the mailing side of things. Welcome to GlenysShepherd — I trust that you also
have the continuing support of us all.
Holidays
and the short weeks associated with them are with us through to May, which make some of
the official networking more challenging. But in this complex and changing world of
systems restructuring that is an ongoing fact of life. We need to always be on the alert
for new opportunities.
The
Residential Care Sector comprising of Rest Homes, Private Hospitals, Community Support
Accommodation and Mental Health Rehabilitation Homes is responding to government policy
initiatives and different funding criteria. To improve the networking in Auckland we are
providing two seminar-workshops in March. There has been an added off-shoot in that some
facilities have requested an in-service session for their own staff. While the Field
Officer has provided in-services for many years, the response to the mailout has
strengthened awareness in this important sector.
PROGRAMME FOR 2004 (Venue: 7A Taylors Road
unless other indicated)
Field Officer at Office: Wednesdays 9.30 —12.30 or by appointment
Northland visits: Weekend of February 27 to March 1.
Residential Care Seminar/workshops: 11 and 22 March 9.30 —1 1.30
Saturday Seminars: with guest speaker and open to all to attend 10.00 —1.00
20 March: Dietician talking on nutrition
11 September, 13 November speaker to be advised.
Committee meetings: 3 February, 16
March, 20 April, 1 June 7.30pm.
AGM plus speaker: Saturday 26 June 1.30 — 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
FUNDRAISING
The committee is setting some funding and
budget goals for the coming year and into a five year forward plan. All ideas for
fundraising are welcome. Think about your networks and who or what may be sources of
income for the Association. Contact us and we will help with the “how to” make
formal approaches.
My best wishes to all for a worthwhile
year in this wonderful country of ours.
Beth Gordon — Field Officer
Waikato News
MS Waikato
Trust is pleased to announce that Professor Richard Faull will be coming to Hamilton on 15
April to speak in three different education forums. First
he will speak to medical staff at Waikato Hospital at their Grand Round at 12 noon where
he will discuss the latest in cutting-edge research into degenerative neurological
diseases. At 3pm all clients and their
families are invited to Hamilton Gardens Pavilion to hear Professor Faull’s update on
research and the brain bank. In the evening,
Waikato Post Graduate Medicine will welcome Professor Faull as their main speaker at their
monthly education seminar for GP’s and allied medical staff.
We
welcome any HD families in the wider region to attend Professor Faull’s afternoon
presentation. Please phone or email Donna
Kay, Information / Service Co-ordinator for details (07) 839-5506 or donna.mswaikato@clear.net.nz
Our
new Support Co-ordinator, Diana Bird, will be commencing work with MS Waikato Trust on 1
March 2004. We are certain that Diana will
provide the energy and commitment needed in our region to revitalise the Waikato HD
Support Group. Please contact the office if
you would like a visit or have any questions about our services.
Wellington
News
Hello and Greetings from Jane in the Hawkes Bay
and Rae and Dorothy in Wellington. By the time this Newsletter reaches you, we will be
three months into the year and hopefully we will have visited many of you and will have
most of our activities up and running.
As you will have read in the editorial, the new HD House should be completed end of April
with residents moving in as soon as possible. We are all excited about this prospect
and the residents are already busy choosing the colours etc for their rooms. We hope
that by the time the house opens, we will have a name for it!
The swimming group, which takes place
in the Hutt Valley, will continue to run every second Wednesday and we do encourage anyone
who has HD and lives in the Wellington region to join us. It really is a lot of fun as
well as being an excellent source of exercise.
The Hawkes Bay support Group
will continue again this year and it is hoped that the support group in Wanganui will
start again once a new social worker is employed in the next few months. Until this
happens, please feel free to call Dorothy should you have any concerns.
Now is the time for those living
in Manawatu, Wanganui, Taranaki, Gisborne, Hawkes Bay, Wairarapa and the greater
Wellington area to tell us if you would like new activities and services to start in your
area. Please contact one of us with your suggestions, we are eager to hear from you.
Best wishes to you all.
Dorothy Tortell
Senior Social Worker
Canterbury News
Christchurch HD Association
wishes all its members the best for 2004 and advise the following:
Picnic on Sunday 7th March,
Band Rotunda in Botanic Gardens, noon onwards. Cancellations on NewstalkZB.
- Fundraising movie –
“In America”, another piece of brilliance out of Ireland. Sunday 14th
March, 2.30pm, cost $12.00. For tickets phone Marnie 327-8057, Shirley 981-0523 or Louise
381-2215.
- AGM, Sunday 2nd
May, 2.30pm at Hornby Day Care Centre. Come and hear Kathy Jaegar of Lifelinks talk about
services and funding you may be entitled to.
We recently took part in a series of
“Constructive Conversations” organised by the Social Sciences Dept of the
University of Canterbury. This is in response to the wider use of genetic testing and how
it affects/intrudes on people’s lives. In America some Corps are now asking
prospective employees to take genetic testing. There is a further conversation in approx 5
months time culminating sometime later with a workshop attended by Consultants who advise
Government re policymaking.
Regards
Louise Boyle
Christchurch HD
Association