Issue 94, September 2006
Our AGM was held successfully on the 15th July. Thank you for everybody's support prior to and on the day. We had a good turn out.
Neurological Support Centre
A big thank you must go to Professor Faull and his team and to Dr R Roxborough for dedicating their time to our AGM and giving enlightening information on the current research events.
The committee was also able to nominate two other members. This is fantastic news.
I am able to meet individuals at the office but it must be by appointment so that I can keep my time flexible. I try to visit the office most mornings to attend to the voice mail and emails.
I met with families and professionals in April and have established some good links for individuals in Northland. I plan to go again in October. Please feel free to contact me if you wish me to visit.
The next carer's day is 9th September at 10am to 3pm
7a Taylor's Road
Saturday Seminars and Gene positive group to be arranged.
Back to the top
Your requests and ideas are welcomed; please do not hesitate to contact me on
09 815 4264 or 021 038 7809
(Covering the following Wellington Huntington's Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
Back to the top
The Hawkes Bay, Wanganui and Gisborne support groups continue to meet on a regular basis and the fortnightly Wellington swimming group is going strong. A new coffee group for carers is also up and running in Wellington. New people are welcome to attend any of these events. Please contact your social worker for further details.
We have organised a caregiver's retreat for the weekend of 16 & 17 September in Palmerston North. This is an opportunity for carers in our regions to meet other people walking the same journey, as they support a family member with Huntington's Disease.
We look to seeing you at the AGM at 11am on Sunday 10 September at Watsonia Court,
1 Rodney Street, Lower Hutt.
Carla - Thank you Lynn and Jane for looking after my area while I was away on holiday. I had a wonderful time in San Francisco and Alaska, but it is good to be home again. I am looking forward to the retreat planned in September, and I hope that the participants will find it informative and supportive.
Gill- We had a wonderful visit from Prof. Richard Faull on the 7th July, 130 (approx) attended the lecture and everyone was so encouraged. We were so lucky that we didn't have to fund the visit, he took the flights out of his research grant and the local Alzheimer's group funded the catering. The HD society presented him with a hamper of Gisborne fare, which he really appreciated. Hopefully this has raised the awareness of HD a little more in the local community.
I have recently joined the local community agencies group who meet bi-monthly. This can be a valuable source for all manner of information and resources.
Jane - The Hawkes Bay support group met in July for a pot-luck dinner. It was an enjoyable evening and an opportunity to catch up with each other in a relaxing way. We are grateful to The Beacon for sharing their house with us so generously - it is a great community facility.
The meeting also kept us up to date with Carly's training for the Ironman in early 2007. Carly is hoping her efforts will raise awareness, knowledge and funds for families living with HD.
The support group always welcomes new people, so please contact me if you would like to attend a meeting.
Lynn Farrow, Jane Harkness, Carla Perry and Gill Fraser
Hello my name is Lynne Switzer and I am the new Fieldworker for the Christchurch Region.
Back to the top
I have lived and worked with people with neurological disorders for the past 20 years as a parent, nurse and social worker - both in the community and care facility.
However, despite many common features, there are special challenges unique to Huntington's Disease ( e.g. heredity and family effects.)
For those no longer in employment, coping with the challenges of daily living activities, enjoying television etc, day after day, social isolation may become a reality. To this end we continue our monthly recreation group.
We try out new activities and eateries but most of all accept and support each other in a unique "Huntingtons" way.
For the wider HD community I would like to plan a two monthly information sharing/support group over a cup of tea or coffee. These meetings would be held in the community room at Linwood and Riccarton Libraries. Speakers will be invited to discuss informally, such things as diet, neuropsychiatry, income and community supports, genetic testing, carer stress etc. Time, date and subject will be advertised through this newsletter as well as direct mail outs to our members for the first meeting.
What's Been Happening In Christchurch
Hello I am Dianne Collins the new chairperson of the Christchurch HD Association.
My family and I have been involved with our local association now for 6 years since learning of our daughter Kimberley's HD status.
Over the last few months our association has enjoyed another Film Evening, this is always a great chance to get together and watch a great film, catch up with new and old members and raise money for our association at the same time.
We have had large A3 posters made to use in displays to promote awareness of HD. These have basic easy to read information about the disease, contact information and a colour photo of a family. When discussing this photo idea with my family our daughter decided that she wanted to be one of the people in the photo, so four generations of my family were photographed for this.
We are all very pleased to be part of educating people about this disease that affects our family and extended family. We had three visual displays set up during Neurological week using these posters and also written information to try and educate and bring an awareness to the public about HD. Beautiful artificial Amaryllis flowers also adorned the displays with a description of their symbolic meaning to HD. Bright balloons drew peoples' eyes to our displays and pamphlets were also available for them to take away.
I was delighted when I went to take down a display from the Beckenham Service Centre and Library to find all my 30 pamphlets I had put out there had been taken over the week by the public. This also was highlighted by a free community spot on our local Television Station, C.T.V. the Friday before Neurological week where I was interviewed about HD. The interviewer was an ex nurse and had nursed someone with HD a few years ago, so was very aware of the disease and what it does so was enthusiastic about talking about it and pushing awareness of it. This made the five minute slot go very quickly without me having to say a lot as she was firing off facts and figures and was passionate about HD awareness.
So thank you to C.T.V. for this generous time slot. Our field worker Lynne is like a breath of fresh air, very enthusiastic and committed to our HD people and their families, supporting and being a voice out in the community, a very loud voice and advocate sometimes, making sure our family members are being heard. Thank you Lynne for all you are doing, it does make a difference.