The Huntington's
Scene In New Zealand |
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| Articles taken from the Sept. 2003 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand |
Carers Seminar: A full days seminar was held on 24th May with facilitators Ros Goodliffe and Beth Gordon. The thirteen people attending found this to be a special experience and are looking forward to a second session in October.
The AGM: Was held on 28th June 2003 and attended by a good number - some needed to sit on the floor!
The organisation said thank you to Fay and Neil O'Brien for their 20 years commitment to the Association and the families we support. Their contribution as Treasurer and Committee members will be remembered and we already miss them. We wished them well for their increased boating and leisure lifestyle. Election of Officers: President: Chris Lock Secretary: John Oswin Treasurer: Susie Oswin
The committee comprises of: Jocelyn Bullock, Donna Oswin, Chris Ward, Virginia Hogg, Roger Martin, Tom Cave.
We were honoured to have Prof Richard Faull (our Patron) and members of his research team present their latest developments on the regeneration of new brain cells (glial and neurones) following HD. This exciting news was featured in the NZ Herald of 11 July 2003,
We heard from Dr Ken Taylor about the changes to the drug development trials and again await further developments there.
Committee Meeting Held 12 August covered many aspects of the organisation and responsibilities of members of the committee. There is a need to plan for the future of the organisation in particular in regards to the legal and financial structures and systems as we grow to meet greater demands. All very challenging and we trust rewarding for the future generations.
Field Officer As well as being available to the people serviced by the Counties-Manukau, Auckland and Waitemata District Health Boards, we include Northland District Health Board areas. A trip to Whangarei on 1st August was appreciated by the families and health care staff and supported by the committee fundraising efforts.
TENTATIVE ACTIVITIES & DATES FOR 2003
(Events held at the Neurological Support Centre, 7A Taylors Road, Morningside, unless otherwise stated)
1 HD Association Committee Meetings: Tuesdays at 7.30pm 23 September 28 October 9 December
2 Saturday Seminars and Pot Luck Lunches: Saturdays 10.00-1.00
13 September: The guest speaker. Hazel Johns will discuss Families
and Coping Strategies. 29 November: Speaker
3 Gene Positive Group (invitation only): Tuesday at 7.30pm, 21 October
4 Carers Seminar/workshop (invitation only): Saturday 11th October 10.00-3.00pm: Facilitators: Hazel Johns and Beth Gordon “Family matters” .
As you read this you will be experiencing the Springtime and we will be looking ahead to planning events for 2004. Please contact me if you have some special requests or ideas. Thanks.
NEW NEWS: The Auckland office now has e-mail so you all have an alternative way to communicate with us. The address is: huntingtonsakld@xtra.co.nz
Beth Gordon - Field Officer
NEWS FROM
CANTERBURY
Greetings from Canterbury. Winter appears to have been long and for those of us without central heating and log fires, cold and very damp. Temperatures have been struggling to get into double figures but happily the end of August and the sight of daffodils heralds the approach of spring. We have had a few happenings with Huntington’s down here, some of which are:
March We had a picnic in the Botanic Gardens, attended by about 30 people who really enjoyed the company, the conversation, the relaxed atmosphere and the glorious weather. It was agreed that the picnic was successful and we will repeat it next year.
April A fundraising movie afternoon. “Chicago” proved a popular choice and we had a full house. Thank you everyone for your hard work selling tickets and to those who supported the movie.
May Professor Faull was in Christchurch and gave up some of his time to have a meeting with the HD community and bring us up-to-date on the latest development with stem cell research and brain cell revitalization. We had a good turnout and Professor Faull’s talk was received enthusiastically.
Also in May our AGM, attended by approx 25 people. Our guest speaker this year was Dirkje Pera, Nurse Manager of a retirement home and hospital. Dirkje spoke of the “Comparison of Social Services between South Africa and NZ”. Did you know?
South African population 44 million.
40% unemployed, no welfare for them.
Only welfare available is the old-age pension of $NZ100 per month, which might have to support a family of up to 10.
Life expectancy is 45 years!
Main health problems is HIV/AIDS (20% of population).
The meeting concluded with afternoon tea and chat.
July In Neurological Week we organized some exposure for Huntington’s Disease on the local TV channel, community newspaper and radio station. Thank you Mary and Shirley for all you did for Huntington’s.
Taxi Vouchers -
Christchurch
Did you know you may be entitled to taxi vouchers if you have mobility difficulties? The vouchers are issued by Total Mobility and allow passengers to travel at half the usual taxi fare. Taxi companies claim reimbursement for the other half of the fare from the City Council.
Eligibility:
“Eligibility for vouchers is assessed by issuing agencies and is based on the following criteria which has been set down by Transit New Zealand.
Eligible people are those persons who for reasons of physical, sensory, intellectual or psychological disability, whether congenital, acquired or age related, satisfy the following criteria:
Cannot unaided (or could not if public passenger transport were available) complete any of the component activities involved in making use of passenger transport. The component parts of public transport use are defined as:
- proceeding to the nearest bus stop/train station;
- boarding, riding securely and alighting; and
- proceeding from the destination stop to the trip end.
There is no restriction on non-disabled persons accompanying a voucher holder.”
Vouchers are available for use in the greater Christchurch area, Ashburton, Timaru and Waimate.
If you would like to use this system please contact our Field Worker, Shirley Ward, phone 981-0523.
Regards,
Louise Boyle
Chairperson, Christchurch HD Assn.