Issue 102, September 2008
Auckland and Northland News
We are pleased to announce the appointment of our new Assistant Co-ordinator - Family and Rest Home Liaison, Jane Devine. Despite having a British accent after working in England for 10 years, she is in fact a born and bred Kiwi. She has spent the last seven years working in Melbourne in a specialist facility caring for Huntington's Disease patients as a liaison carer support.
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She brings a great amount of experience to our association and is a huge help to Jo. Welcome Jane.
We had a packed house for our annual AGM which was held at the end of June.
We have welcomed our new chairperson, Sarah Wilkinson, who has done a fantastic job of running the committee since Kim Smith left and some new faces to the committee. We have now grown to a record size of 10 members and have an impressive range of skills from marketers, accountants, lawyers and the odd scientist!
The AGM concluded with an update from our patron, Professor Richard Faull, which is always the highlight of the meeting. Richard and his team gave us an update on their latest findings on the human brain. It sure stimulated a few brain cells in the audience
(Covering the following Wellington Huntington's Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
The Christchurch conference will soon be upon us and then Association will be facilitating a Carer's Retreat in Palmerston North on 1st and 2nd November. There are limited places available at the Retreat and these will be allocated on a first come first served basis.
The Wellington Swimming Group continues to meet every fortnight at Hutt Hospital. It is a very good way of getting some exercise, so if you are interested in coming along, give me a ring (021 344445).
The Support Group meets every six to eight weeks and new members are always welcome. Come along and have a coffee and a chat.
New Plymouth, Wanganui and Palmerston North
I am continuing my routine of visiting the New Plymouth area every 2nd Monday and Tuesday of the month which seems to be working well. The other weeks are dedicated to Manawatu, Wanganui and Pahiatua and this appears to suit most people.
I am currently developing new presentations on HD and have several booked over the next few months to educate and support staff which I believe is an essential part of my job.
I intend to continue to increase my involvement with other community agencies and promote the Association, and the support it offers to families facing the daily challenges of living with HD.
Up until now I have been available to people most days however as of September I will be changing my hours and only working three days a week but will continue to see people at other times should an emergency occur.
The annual weekend retreat is almost fully organized and we are all looking forward to our first retreat as a team of relatively new workers. We currently have 10 people who have responded positively so there are only two places left so if you want to attend please contact me quickly.
Please feel free to contact me should you require a home visit or any other form of support.
Hawkes Bay News
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Welcome to our new families. Our support group continues to meet six-weekly and is a great opportunity to get together and share and have some fun.
I attended the local Disability Community Workers Meeting which was really informative and gave me the chance to meet other workers. I have since met with the MS Society and we are in the process of organising a joint weekly swimming / water exercise class for our families which will be great fun and of great health value for us all.
I am looking forward to the Carers Weekend in November which will provide lots of well-deserved treats for our carers.
Some of us from our group made it to the inspiring lecture by Prof Faull here in Napier last month - I am really looking forward to the September Conference and bringing all the information back to our families.
I was unable to get to Gisborne on my scheduled day which coincided with the worst weather ever!!! Am now resigned to driving up and staying over the night instead of trying to fly, so hopefully will be up there within the month. I am very much looking forward to seeing everyone up there.
I am available for one-on-one and family meetings for support and information. Please feel free to contact me.
Greetings from the south ... the 2008 Huntington's Disease Conference is only weeks away and all the planning and preparation is finally falling into place. We look forward to hosting you all in our beautiful city and it will be a great chance for people who have been to previous conference's to catch up with each other again and for new people to meet others.
The carers support group continues to be a great resource for carers and family members of those with HD. We alternate with interest speakers and nights of just sitting round and taking about what is happening in our lives at the moment. We share ideas, give friendly advice about situations or problems that might help and just support each other in a practical and yet caring and supportive way.
We are currently selling chocolate again. This is a tried and true fundraiser and one that is always well supported by the HD community. Winter is a great time for people to buy some chocolate, sit at home in the warm and eat it in front of their favourite television programme.
Look forward to seeing you all in Christchurch