Issue 91, December 2005
Thank you everyone for providing many wonderful experiences throughout the year. Although the families within New Zealand and their relatives overseas do not communicate directly all the time, we know that they are there for each other in spirit and understanding. Jo and I are privileged to do our little bit to help along the way. It is timely that we wish you all (particularly the families we do know well)
Seasons Greetings and Many Happy Times in 2006
Please contact the Family Liaison Co-ordinators for more information about the events planned for 2006. We need to keep the date and time details flexible, so that we can make best use of available resources and be more responsive to local needs. Your ideas for events and venues are always most welcome.
Office hours will be by appointment, but the neurological Support centre is open Monday to Friday 8.30 – 4.00pm for deliveries etc.
Committee meetings are held every six-eight weeks. New committee members always welcome, so come and see how you or a friend can participate.
Open drop-ins will replace the Saturday Seminars at 7A Taylors Road. These will be in March, May and November and we want to develop some ongoing drop-ins at Western, Eastern and Central venues. Your contacts for suitable venues will be very welcome.
Carers seminars will continue one full day in April and September. These have been by invitation, so please check whether you are on this particular mailing list.
Gene positive evening sessions have been held on a Tuesday evening in May and September at 7A Taylors Road. A particular contact list is kept for notification of upcoming sessions, so if you want to be on the list please let us know (email firstname.lastname@example.org
Annual General Meeting will be held in June –July and we hope to keep the tradition of having Professor Richard Faull (our valued Patron) update us with research developments.
Northland visits will be scheduled to meet family needs with a view to visiting twice a year (Whangarei and Dargaville areas). So tentatively April and November.
In-service sessions will be scheduled as needed by residential care staff, health-care Personnel and home care employees in response to requests.
Information services are always available: print, email and direct. Make sure that families get to see the Huntington’s News for research developments.
Beth Gordon (0274 749 163)
Jo Dysart (021 038 7809)
My name is Liz Hogan and I am the new Support Co-Ordinator for MS Waikato Trust.
I began in this role just 4 weeks ago and I’m just loving it. My professional background is in Nursing so I am able to draw on those experiences to some degree. I am currently endeavouring to meet as many of you as I can, so please help me in this by making contact with me too!
I am here to provide support, information and home visits.
My hours of work are 8.30am-5pm Monday, Tuesday and Wednesday 8.30am-12.00 Friday.
I can be contacted on 07 834 4741 or 0274 287 417
My first week in the job saw me flying to Wellington with Diana for the Huntington’s Conference, a wonderful experience and I learnt so much. I felt excited by the research being done and positive for the future for Huntington’s Families. I was also fortunate to be able to visit Amaryllis House, a truly superb facility in Lower Hutt, I would like to think that a similar facility will be possible in the Waikato in the future.
As a follow up to the conference, the Huntington’s Disease Support Group had an evening of feed back to members from those of us who went to Conference, this was well supported.
I am looking forward to the HD Support Meetings in 2006 the first one will be 6th February at The Life Unlimited Building 20 Palmerston Street, Hamilton.
I am also organizing a Carers Xmas dinner, so keep Monday 12th December free, I have booked Metroplis Café in Victoria Street Hamilton for 7pm. I will give you all a call to confirm numbers, this might be a nice night to invite a friend or family member who has supported you in your caring role. I’m looking forward to a fun night.
As I have mentioned Diana, I need to reassure you all that although I have taken over her role, she has not left and is the Information Co-Ordinator, good news for us all.
I look forward to meeting you all, please don’t hesitate to get in touch with me.
Wellington/Taranaki/Hawkes Bay News
Seasons Greetings from Lynn, Jane and Carla
We would like to officially welcome Sir Roy McKenzie, ONZ, KBE as the new Patron for the Wellington HD Association. Sir Roy has been of huge support to the Association for many years now and we are honoured that he has accepted this position.
The Wellington Association welcomes Cecil O’Neale, as their new Chairperson. Cecil has been a Committee Member for many years and was formally appointed at the AGM in September.
We all had such a wonderful experience at the National Huntington’s Conference. It was good to put names to faces, and meet so many wonderful people. Many clients, whanau/family and medical professionals from our areas went to the conference, and all that we have spoken to since have commented on how valuable the experience was.
We would like to thank Dorothy and the Wellington committee for organising the conference. It really was an amazing experience and a tribute to all your hard work.
The Hawkes Bay, Greater Wellington, Taranaki, Wanganui and Manawatu Region also sends their thanks and best wishes for the future, to Dorothy, for all the support given to these areas over the years.
Please feel free to contact me should you require support, information, advocacy or just a chance to chat. I am available for family meetings, doctor’s visits, needs assessments or just family support. I do need a little advanced warning however to attend appointments.
Jane - Hawkes Bay
I am interested to hear from you, whether it be questions you think I may be able to assist you with; ideas you think the HD community might find useful or perhaps ways you think the HD Association might be better able to support families in the Hawkes Bay. Please phone 06 835 3020.
Lynn - Greater Wellington
I would love to hear your ideas for ways you would like the Wellington social work service to be developed. I would be particularly interested to hear from those young adults who were present at the HD camps during the 1990s. I can be contacted either by phone, letter or email.
Have a great Christmas.
"Greetings to everyone”. Not a lot seems to have been done in Christchurch this quarter but believe me it has. We were successful with some funding for the National Conference, thank you Canterbury Foundation.
Our social group has been dormant for a while but is out and about again. We will be having a Christmas lunch on Friday 16th December, lunchtime, at the Hornby Junction Buffet. If anyone is interested in coming along contact Shirley 981-0523 or Louise 381-2215.
We now have a new postal address: C/- Community House, 141 Hereford St, Christchurch. This gives us the opportunity to use the equipment in Community House, photocopiers, faxes, etc and book rooms for interviews or meetings. We don't actually have an office in the House but our mail is collected and held there. It is also another networking tool.
We are presently being audited by Ministry of Health and are awaiting the outcome of this.
Happy Christmas to everyone involved in the HD Community.