Issue 89, June 2005
First of all, big THANK YOU Donna and the fundraisers for getting the Trust and the Association on track for this coming year. Jo Dysart now has more paid hours attached to her roles and she will be extending her geographic coverage, as Beth Gordon will share more of the “territory”!! So, when you get a phone call from Jo and or Beth feel “not guilty” when you accept a friendly visit. We enjoy visits, which may appear non-essential to you – we consider all visits important.
The plan is for Jo to cover Auckland and Waitemata District Health Boards and Beth to cover Counties-Manukau and Northland DHB’s for now. We have been getting the HD name “out there” by placing contact details with various information databases and into directories when invited. Also the Auckland web-page data has been updated.
Thanks to Virginia Hogg and Jo we have a second pamphlet published which takes a slightly different slant for first time HD readers. We have bought more of the Australian publications, which people keep requesting.
The 2005 events have started and planning for the year continues. Thanks to Wellington for the useful meeting day in Lower Hutt on 26 Feb: Chris Lock, Jo and Beth all attended and were pleased to meeting up with the HD folk.
Committee Meetings were held each 6 weeks on a Tuesday evening [1 Feb, 15 March, 26 Apr, 14 June]. The AGM is set for July 16th and notices are mailed to those on the Auckland-Northland mailing list. If you missed out this year get on the mailing list!!!
Prof Richard Faull and Dr Richard Roxburgh the 2005 speakers.
Gene positive group had a mail-out and a meeting [2 May] and will meet again in Aug-Sept. A further mail-out to 36 carers invited them to attend the Seminar, May 21st [“Family Roles and Relationships: keeping the changes positive”]. The second seminar is to be held September.
For those of you considering shared caring and perhaps planning ahead to residential care a useful website will soon include data on the “under age 65 years” options. [www.fullmoon.co.nz] Also visit www.carers.net.nz for support.
That’s it for now – except note Beth has a new mobile so the prefix is changed. Mobile is 0274 749 163 (apologies for some problems during the transition phase!!)
Beth & Jo
We were successfully able to get 3 scholarship tickets for the ‘Caring for Carers’ conference in Wellington in March and so I took down 3 of our HD carers. The conference was a wonderful opportunity to meet with other carers and share common concerns and issues. Details of the conference can be found on www.carers.net.nz.
While in Wellington took the opportunity to visit Dorothy at Amaryllis House. We spent an intriguing few hours there and all had plenty of questions for Dorothy and the manager of the house, Margaret. We were very impressed with the residence, and the care taken to provide an environment where the needs of HD clients were paramount. No matter how good general resthome care is, it cannot make up for a facility which has been designed and is operated with the special needs of clients in mind. Knowing the substantial number of HD clients we have here in resthome care and the difficulties often faced with this environment, we all felt we would like to see a similar facility in Hamilton at some time in the future.
Our next HD Support meeting is to be held at the end of this month and will include a talk by Diana Griffin, one of the speech and language therapists at the hospital, plus Ann Smaill from TalkLink in Auckland who is travelling down to show us examples of their assistive communication technology.
Our Carer support group is now meeting again for bimonthly morning coffees.
I am going away to Thailand and the UK and will be back at the end of July, and so Donna Kay, a social worker with extensive experience, who has also previously worked at the Trust as our Information Service Coordinator will be doing a locum here in my absence.
Wellington/Taranaki/Hawkes Bay News
The Wellington Committee and Social Workers have been very busy over the past few months preparing for the Camp and Conference. The Camp is now a past memory as we think about, discuss and plan future Camps.
We are thrilled with the programme for the October Conference and do look forward to welcoming many of you to Wellington for this special occasion.
Our regional activities continue to be held regularly with support meetings in Gisborne, Hawkes Bay and Wanganui and the swimming group in Wellington. Please feel free to contact Jane, Carla, Lynn or Dorothy about any of these activities or discuss with us any suggestions you have for new activities in your area, e.g support meetings/coffee mornings.
Regards to you all
From Jane, Carla, Lynn and Dorothy
Greetings to all readers from Christchurch
Quite a bit has happened since the last newsletter and to keep everyone informed here is a précis of events:
Last month we had a very successful trivial pursuit evening. This was organised by one of our members Marnie, and her colleague Margaret from Lifelinks. A lot of hard work culminated in a very, very successful evening. We raised over $1,300 which goes towards the costs of the Young People's Camp and the National conference. Thanks also to Sue from Lifelinks who raised over $300 by shearing off her long dreadlocks in support of Huntington's Disease Assn. Lenny the caller kept us on our toes and has a wide repertoire of jokes. Thanks to all who supported us and a very special thanks to our sponsors:
- Field Worker and Chairpersons’ meeting in Wellington - A combined meeting of the three HD Assns, a chance to share ideas to help the three organisations better provide for their members, i.e. updating the website (work in progress), input into the organisation of and fundraising for the National Conference in October.
- Shirley Ward, Christchurch Family Liaison person is the NZ delegate for the International Conference in Manchester, September this year.
- Constructive Conversations - the second and final meeting with members from the Canterbury University Social Science Research Centre. The topic was "Talking About Genetic Testing" and covered ethical issues. This culminates with workshops held over the next two weeks which include policy people from the Ministry of Health, NZ Order of Rare Diseases and Genetic Services. We hope to have a fuller account in the next Newsletter.
- Fundraising for the National Conference.
- AGM - see advert below.
Cafe Olive, Jacobs Bakery, Christine's Beauty Clinic, Lisa Newburgh, Tracey Felton, Burns & Ferrall, Neil Stuart Automotive Ltd, Tony Butler - Radius Security, Avon Cosmetics, Lush Cosmetics, Fenwicks Pharmacy, New World Kaiapoi, Gardenways, Robert Mark Ltd, Caltex Kaiapoi, Supervalue Stanmore, Lakes Chemist, Rialto Cinema - please support our sponsors.
Professor Richard Faull is speaking at the Papanui Club on June 3rd, 1.00pm. This occasion is hosted by the Neurological Foundation and Prof Faull's talk will be on his stem cell research - all welcome.
And last, but not least, please mark down the weekend of 15-16 October in your diary. This is the date of the National HD Conference, always a good weekend to hear the latest neurological research and pharmaceutical help for the symptoms of HD. One of the big advantages I find during this weekend is the opportunity to meet other NZ families who are living with HD and how they cope. The support one gets from other HD people is reinforcing and the sharing of personal stories of people living with and caring for family members with HD is inspiring-
SEE YOU THERE.
We've had our first frost in Christchurch, I'm finding 7.00am starts quite a shock in winter.
Take care everyone and stay warm.
HD Assn (Christchurch) Inc.