Issue 93, June 2006
Hello to you all,
The Trust and Association have continued to work hard on issues such as promoting and educating the wider population on matters regarding HD.
Since Beth’s retirement, I have been slowly getting to meet families that I have not previously had the privilege to meet throughout the Auckland and Northland areas. I would like to offer my gratitude to those families for their support. Thank you.
I am aware that I have not met with everybody as yet. Please do not hesitate to contact me. I will arrange to meet with you shortly.
Gene positive groups, carer’s seminars, committee meetings and Northland visits etc have all been scheduled for the forthcoming year, dates will be posted nearer to the time.
The AGM is set for 15th July. Notices will be mailed out to those on the mailing list. Please phone for details if you are not on the mailing list. We are very fortunate to have Prof Richard Faull presenting his latest research and he will also be introducing our other guest speakers.
Unfortunately to meet with me at the office is by appointment only as I need to keep my time flexible.
I will try to be in the office first thing to clear messages and emails.
Keep warm this winter.
Bye for now,
Clinical investigations into Huntington’s Disease.
If you are a person;
· who has been tested but does not have the Huntingtons gene,
· aged between 20 and 75
· live in the greater Auckland area
· would like either to find out more about this research or be a part of this research
we would really appreciate hearing from you.
This longstanding research project involves people who have the Huntington’s disease gene, primarily living in the Auckland region. The project is being carried out by Dr Lynette Tippett, Senior lecturer in Neuropsychology, Auckland University, Virginia Hogg, Psychologist, Dr Barry Snow, and Dr Richard Roxburgh; who are both neurologists at the Auckland Public Hospital.
This project is part of an integrated programme investigating many aspects of Huntington’s disease, led by Professor Richard Faull of the Auckland Medical School, and it is supported by the Auckland Huntington’s Disease Association.
The project is focused upon investigating the range of clinical experiences of individuals with the HD gene (including mood, movements, and thinking abilities).
In our research group we have a wide range of people across many age groups, from those who have no symptoms of the disease to those who have been experiencing symptoms for many years.
In order to fully understand the disease, its onset and its development, it is necessary to compare the experiences of the research group to a second group of persons of similar ages who have been tested but do not have the Huntington’s gene. This second group is known as a control group and involvement in this study group would take a total of about four hours (this can be done in two or more visits as it suits). It would be conducted either in your home or at the Neurological Support Centre.
You can contact either Virginia Hogg or Dr Tippett, Department of Psychology, University of Auckland, Private Bag 92019, Auckland.
Alternately we can be reached by phone, fax or email as listed below:
Phone: 09 3760 456
Phone: 09 3737 599 ext. 88551
Fax: 09 3737 450
It’s been a very busy couple of months, the highlight for me was time spent with Dorothy Tortell.
Dorothy spent an afternoon with us as we began the process of working toward a purpose built home in the Waikato for people with Huntington’s Disease. This is extremely exciting and we will be involving all the families as we take this out to our community for consultation. I will keep you all informed.
Dorothy spent an evening with us at the HD Support Group, which was wonderful, then, she managed a couple of resthome visits before flying out.
Dates to put on your calendar:
HD Carers Group, Saturday 8th July at Pica Café, Woodside Road Matangi, 10am
HD Support Group, Monday 26th June at Life Unlimited Building, 20 Palmerston Street, Hamilton 7pm. Guest Speaker, Ron Dick Neuropsychologist, Waikato Hospital.
Ron will speak on Behavioural Changes of people with HD and there will be time for questions.
Hope to see you there.
Remember I am just a phone call away if you need me.
(Covering the following Wellington Huntington’s Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
Hawkes Bay is growing a strong community of families who are supportive of each other and who are looking for opportunities to further community knowledge and interest in HD.
Carly has completed the SHE Women’s Triathlon with enthusiasm and raised well over $2000 for the Hawkes Bay support group. Her story, written by her mother is in this newsletter.
On March 19th in Hastings we gathered to celebrate Carly’s achievement and to acknowledge and thank her family for standing with her in her hope to complete the triathlon. While undertaking the triathlon, Carly also created an awareness and interest in the lives of those who live with HD. She did a great job with both. Thank you Carly and all those who supported her in training, with sponsoring, with words of encouragement and with assistance on the day.
The Hawkes Bay, Wanganui and Gisborne support groups continue to meet on a regular basis and the fortnightly Wellington swimming group is going strong. New people are welcome to attend any of these events. Please contact your social worker for further details.
The social workers gathered in March for peer professional development; it is a good opportunity to review our work, to learn from each other and to plan future events such as the young persons camp.
The next camp for young people will be held in 2007 at El Rancho, Waikanae, Wellington.
The dates are April 18th – 21st. This is a camp for young people aged 12 to 18 years old.
More information will be available later in the year. Note these dates in your diaries now if you are interested and talk to your social worker.
Jane Harkness, Carla Perry, Lynn Farrow and Gill Fraser
Christchurch Huntington’s Disease Association held its Annual General Meeting last Sunday, 7th May. We had the usual good turnout of approx 30 people who support us each AGM. Our guest speaker this year was Dave Collins from NZ Care. Dave spoke to us about the building and success of Amaryllis House and also the need for a house for people with HD in Christchurch. A representation from the HD Association had taken a proposal to NZ Care before Christmas and the good news from that is that the funders have agreed that there is a need for accommodation specific to HD in Christchurch. However, although the green light is there, there is no guarantee how soon (or otherwise) it may be ready.
There were a few changes of office bearers at this AGM. Belinda has stepped down as Treasurer and I have resigned as Chairperson. Denise Forbes is our new Treasurer and Diane Collins is our new Chairperson. Belinda and I are both staying on as committee members.
I want to thank the Committee for their ongoing support and team work in the past four years. I found the Chair position to be a rewarding experience and wish Diane all the best in her term.
Welcome to our new Fieldworker
Lynne Switzer is the new HD Field Worker. Lynne comes from a nursing background including years spent in the community. Lynne’s nursing speciality is dementia and I feel confident that both the community and dementia aspect will stand Lynne in good stead in her new position. Lynne can be contacted on Ph: (03) 326-5189
The Christchurch Association welcomes Lynne onboard. We look forward to working with you Lynne.