REGIONAL NEWS
Auckland,Waikato,Wellington and Christchurch

AUCKLAND/NORTHLAND NEWS

AGM - Saturday 3rd July past:

The Annual General Meeting this year was very significant for the organisation as we said a huge thank you to John Oswin for his years of commitment and special leadership. His contributions have been many and wide and he has guided the organisation through the early development stages to the current presence in the community. John resigned as Secretary and member of the committees and he was presented with framed art in recognition of his many contributions.

Our thanks to Professor Richard Faull - our Patron and of course well known medical researcher - who organised members of his team to present at the Annual General Meeting. The information they shared was informative and insightful, especially into some of the finer points of how the research is progressing in New Zealand

We had a great turnout and thanks to everyone present we were able to "partake" of a wonderful afternoon tea. The members of the committee organised a lucky prize, which was well received.

The spring sees the increase in planned events, some of which will have taken place by the time you receive the newsletter. But for the record here’s what is happening:

Committee Meetings: 28 September and 16 November

Saturday Seminars (open): 11 September - Genetic Services (to be confirmed)

                            13 November - What is not caused by HD?  Jo Dysart & Beth Gordon

Carers Seminar (invitation): 25 September - Matters Legal  Carol Curtis

Gene Positive Group (invitation): 12 October - Nutrition matters   Kaye Dennison

Whangarei visit: 6 September - to be confirmed

Greetings from Jo and Beth. We trust that you all made the most of the cold, wet and windy winter without too many ailments. May you be enjoying the longer daylight hours and getting a spring in your step or a spring-like spirit of hope.

Beth

I have thoroughly enjoyed my first few months as Support Coordinator with the MS Waikato Trust. The highlight is the clients who continue to inspire me with their positive and resilient attitudes to life.

Our bi-monthly support group is established, although renovations to the Life Unlimited building have meant a temporary change in venue.

In July, Beth Gordon, the field officer for the HD Association in Auckland, came down to Hamilton and spoke to rest home staff in the afternoon, and to our Huntington’s support group in the evening. Beth looks at the challenges of HD from a fresh perspective, which encouraged open and honest discussion in both groups. Rest homes in the Waikato now have the most up to date information on HD, and publicity for her visit drew some fresh faces in to our support group.

Our previous speaker from Disability Support Link, Margaret Thompson, also provoked discussion and thought in our support group in May. Further speakers for the year include a Dietitian, and a WINZ caseworker. We are also looking at the possibility of having some more social type functions for this group.

A group of our carers are meeting bimonthly at the Lake to share a coffee and any unique concerns they may have.

We were able to receive 2 complementary tickets for rides in the ‘Balloons above Hamilton’ in June, and were delighted to pass these on to 2 of our younger HD clients. The first day drew a false start as stubborn fog refused to budge off the Hamilton Lake and surrounding district. I was up at 6am (not quite my usual style on a Saturday morning) armed with a camera, but only managed pictures of us dining in the large breakfast tent open to participants. Luckily our clients were able to get up in the balloon the following day and reported they had an awesome ride.

Yes, it is almost finished!!! This has been a mammoth task for so many people over a long period of time – Healthcare New Zealand, Wellington Huntington’s Disease Association, family members, architects, builders and many other tradesmen. A real achievement with so much to celebrate! We are really thrilled with the house and look forward to helping the residents move in and unpack, which we hope will happen over the next few weeks.

An Open Day was held on Saturday 4 September to provide an opportunity for the HD community to visit the House.

The Hon. Ruth Dyson, Minister for Disability Issues, will officially open the House on Thursday 9 September. A full account will be included in the next issue of Huntington’s News.

Dorothy Tortell

Since the end of July, the Wellington Association has employed two more social workers bringing the number of social workers to four. In addition to their social work qualification and experience, each social worker in our team brings a background in another relevant discipline – physiotherapy, counselling, occupational therapy and nursing. The team members introduce themselves below.

Dorothy Tortell I feel very privileged to have been working with the Association for the past 12 years as social worker and during this time I have had the opportunity to travel to many parts of the country visiting and supporting many amazing families. I believe my background as a physiotherapist and social worker has helped me in my work for the Association. With the arrival of the two new social workers, I have been given the role of coordinator as the senior social worker for the Association. In addition, I will continue visiting and supporting the HD community in Gisborne and the newly opened Amaryllis House in Lower Hutt. I will also stay involved in various special projects.

I can be contacted on 04 5693252 or 0274 440520 or the Association’s postal address, which is PO Box 30-420, Lower Hutt.

_________________________________________

My name is Jane Harkness and I am the Social Worker for the Association in the Hawke’s Bay area. I have been in this position, part time, for about 6/7 years. I have a background in social work and counselling, both in New Zealand and the UK. I have worked in voluntary and statutory organisations in the areas of health and welfare and much of my work is with families and children.

I am also active in the lives of my two children, which, as you might imagine takes me many places!

In the Hawkes Bay area, the Huntington’s Disease Association provides a social work service to, families who are affected by Huntington’s Disease, their support people, rest homes and other interested organisations. This includes providing information, resources, advocacy, counselling, a telephone service, and a support group.

The Hawkes Bay Support Group meets regularly every 6 to 8 weeks. It is very supportive of new and existing members. Sometimes the meeting is social, like a potluck lunch and other times we meet to share information and resources.

The group is inclusive of people who have the gene, their partners, family, extended family and support people.

The first point of contact for the social work service is through the HD phone line.

Please leave a message and if possible an evening contact number.

Contact:
Social Worker
Jane Harkness
C/- 122 Chaucer Rd
Napier
06 8353020

___________________________________

I would like to introduce myself to you all. My name is Carla Perry, and I am the new social worker covering the Taranaki, Wanganui and Palmerston North area. I have been a medical social worker at Taranaki Base Hospital for 9 years and before training as a social worker worked as a registered nurse. I have enjoyed my time at the hospital, but feel it is good to move on to new challenges and experiences. On a personal level, I am married, and have three children, ages 21, 19 and 15. I am originally from America, but have lived here 23 years, longer than I lived in America! I look forward to meeting you all in the near future. I feel very fortunate that I have Dorothy to act as my mentor and guide in my new role, and it will be a privilege to work with her and the rest of the social work team.

I can be contacted on 06 7553981 or 025 966500 or by email: cperry.wellingtonhda@clear.net.nz
My postal address is PO Box 3225, New Plymouth

_______________________________________________________

Hello my name is Lynn Farrow. I was recently appointed as the HDA Social Worker for the Wairarapa (up to and including Masterton), Wellington and the Horowhenua region (up to Foxton).

A little bit about me: I am originally from the U.K. I lived in the North West of England in a town called Warrington situated between Manchester and Liverpool. I immigrated to New Zealand in 1996 with my husband and two children. I have since had a third child, "my little Kiwi" and now have three boys. It sure does get noisy around my house sometimes…

My career path is varied. I originally qualified as an Occupational Therapist in the U.K and worked in hospital, social service and community environments. I gained experience in many areas including physical disability and mental health. After moving to New Zealand I continued my occupational therapy career for a short time before deciding to have a break from paid employment. I then spent several years at home with my children adjusting to life in New Zealand and forming new networks. I then followed my children back to school, hit the books again and enrolled in a Wellington based social work course. After qualifying early in 2003 I gained employment with a statutory agency for a year before taking on this position with the Huntington’s Disease Association. I am excited to be working back in the community again and to have the opportunity to build on my skills in the field of disability.

If you require any assistance I can be contacted on 021 344 445 or 04 569 3252, or by email: lfarrow.wellingtonhda@xtra.co.nz

Any mail correspondence should be addressed to: The Huntington’s Disease Association (Wellington Inc), PO Box 30-420 Lower Hutt.

I look forward to meeting and working along side you.

Cheers,
Lynn

"Best wishes to everyone from Christchurch.

A quiet winter event-wise for the Christchurch HD organisation as a whole, however the committee continued to meet and work.

Our AGM in May was successful with 33 attendees.  Our guest speaker, Cathy Jaegar of Lifelinks gave valuable information regarding accessing assessments and assistance in the community.

The Finance Committee has met to organise funding needs and get fundraising underway.  If anyone wants to sell chocolates please give Belinda a ring (383-5188).  Our immediate priorities are to provide a computer for the Christchurch HD Assn, which will be housed in the meantime at Shirley's (Field Worker) home.  Our second fundraising priority is the National Conference in 2005.

Christchurch HD Assn has managed without a computer, however with numbers growing and also with heightened awareness of confidentiality it has been decided that now is the time to purchase. 

There are some good computer/printer/scanner packages available at very competitive prices.

Don't forget Christchurch, if anyone needs the use of a wheelchair on a short-term basis your Association has one.  If you have a relative or friend staying who has difficulty with mobility then please make use this chair.  Contact Shirley 981-0523.

The committee looks forward to setting activities for Spring/Summer and will advise local members via letter.

Regards to all from the Christchurch HD families.

Louise Boyle

Chairperson"