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7 Sep 16

Issue 90, September 2005

Regional News

Auckland | Wellington | Hawke's Bay | Taranaki/Wanganui/Manawatu | Christchurch
Auckland/Northland News

Please note the correct office number is (09) 815 4264 – somehow it was printed incorrectly in the last few newsletters and thanks to Graham Taylor who noticed. The website number is correct.

The big news is that the Annual General Meeting was held on 16th July at the Disability Resource Centre, Royal Oak, Auckland. The committee members remained for re-election and so we are pleased that Chris Lock (chairperson) will have a grand team back with him: Tom Cave, Susie Oswin, Chris Ward, Roger Martin, Kim Smith. Virginia Hogg is on a year’s stand-down and will be missed for her important contribution. Susan Lock has been officially appointed and will continue to assist with vital secretarial work.

Fundraising has been placed with the Auckland Huntington’s Disease Trust with Donna Oswin continuing her successes with keeping the organisation viable.

Approximately 55 people attended and during the afternoon tea (grandly provided by those attending) the room was full of lively conversations. A survey had been distributed and the results of the 40 completed questionnaires indicate a very high level of satisfaction/importance of the functions of this Association. The results will endorse forward planning and indicate the need for more specific data gathering.

As always the highlight of the AGM is the guest speakers. Professor Richard Faull was congratulated on receiving an honour and thanked for all his Huntington’s Disease research. He introduced Jessie Kitchen a PhD student researcher, who enlightened and enthused us about the new animal model research project: stem cell proliferation. We all then had a very informative session from Dr Richard Roxburgh on the Neuro-genetics of the Huntingtin Gene and so were encouraged to understand avenues for scientific and clinical research. The session was full of “good news”.

August will be a quieter month (but we do have In-service sessions booked for two residential care facility staff) and then we swing into seminar/meetings in September: Gene Positive Group (mailed invitations), Carer Seminar (mailed invitations). October has the following planned: Home Care Support Workers Seminar (mailed invitations) and you all know about the Conference organised by Wellington. In November the open Saturday Seminar is set for Saturday 5th and Beth will make Northland visits around the 18 –20th November. Please let Beth know what suits you best.

Note to our Auckland families: The Association has a standard self-propelling wheelchair available for loan. Contact Beth or Jo for more details.

With this September Newsletter it is timely to say welcome to spring and all the joys we anticipate in the coming weeks. Already the daylight hours are longer. We wish our families many memorable moments –
from Beth & Jo.

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Wellington News

Hello from Lynn (Wellington)

A special welcome to all those in the Wellington region receiving this newsletter for the first time. Please feel free to drop me a line.

As the date of my first anniversary with the Wellington Association whizzes by, I would like to take this opportunity to post a friendly reminder to the families I support. Although my social work position is part time I endeavour to be as flexible as possible when arranging appointments and will respond to your phone calls and emails at the earliest opportunity (usually within 48 hours). If you would like more frequent contact please let me know. It would be good to get some feedback.

I am conscious that the Wellington area does not currently have a support group. I did not receive any response to the advertisement placed in the December 2004 issue, requesting expressions of interest for a support group. Do Wellington carers want their own support group? I would love to hear from any carers interested in meeting for friendship, support and education.

The Wellington swimming group continues to meet every second Wednesday at the Hutt Hospital heated pool. New comers are most welcome.

The Committee is very busy finalising arrangements for the HD Conference on 15-16 October. We have received quite a few registrations and the hotels are filling up fast. Dorothy has worked tirelessly on the conference programme for several months now. The list of guest speakers is most impressive and should provide something of interest for everyone.

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Hawke's Bay News

Hello from Jane (Hawkes Bay)

The Hawkes Bay Support Group continues to meet and continues to offer support to families who are living with Huntington’s Disease. The generosity offered by “old members” to “newcomers” is wonderful to witness. It is not an easy step to venture into a group, particularly when you do not know anyone. The “older members” seem to have an appreciation of what it takes to do this and are very encouraging and supportive of new families attending the group.

The Support Group has also fund raised to provide financial assistance to families interested in attending this years Huntington’s Conference in Wellington. The families are very enthusiastic about hearing up to date research and networking with others from around the country.

The social work service in Hawkes Bay is steady and there are new families approaching the Association for support, advocacy and counselling regularly.

If you have any ideas about how the service in Hawkes Bay maybe developed please contact me, I am very interested to hear your thoughts.

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Taranaki/Wanganui/Manawatu News

Hello from Carla (Taranaki/Wanganui/Manawatu)

I am visiting folks on a regular basis. If I haven’t been to see you yet, or you would like more regular visits, please let me know. I am also able to attend specialist appointments with you, if I have enough notice prior to the appointment. I am also now being included in Multi-Disciplinary Team meetings and family meetings at Rest Homes. I am also available to talk to families who have had Huntington’s diagnosed in the wider family group, to share information, knowledge about Huntington’s and supports available in the community.

The Wanganui Support Group got off to a good start in February, with more than 15 people attending. Since then our numbers have been much smaller, with a core group regularly attending our bi-monthly meetings. We have had a GP, Access Ability, an Occupational Therapist and a Physiotherapist attend the meetings as guest speakers. The information they provided was very helpful. Should you wish to know more about any services, please contact me, as I am able to provide information and do referrals to appropriate agencies.

Please don’t hesitate to contact me should you wish to talk to me for any reason. I am happy to call you back, to save you a toll call. Please note, I only work part time, so you may need to leave a message on my answer phone, but I will try and get back to you within a day.


Don’t forget- in an urgent situation, contact your G.P, after hours medical service or call 111 for the emergency services.

We look forward to meeting you all at the Conference.

Lynn, Jane, Carla and Dorothy

Just as we go to press, the Wellington committee has been advised by Dorothy Tortell that she intends to leave her position as Senior Social Worker at the end of this year.

Dorothy has been with the association for 12 years and has touched the lives of many people during this time.

Dorothy and the committee will be working hard to make sure continuity and a structured handover to her successor takes place.

More details will be provided at our AGM and in the December Newsletter.

Graeme Bradley (Chairperson)

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Christchurch News

The Christchurch Association AGM in May was well attended with people keen to hear our guest speaker Sandy McLeod.

A poignant statement "Today patients are being forgotten and they have to advocate very strongly to help patients" (in regard to where funding is given).

Two long-serving committee members have resigned - Molly Hutton and Frank Bojarski. Molly and Frank your participation has made a difference to people's lives, thank you for your commitment.

We are delighted to welcome Diane Collins to the Committee.

The Committee continued to apply for funding to further assist the coffers for the National Conference. Very frustrating results - so far no success and only one agency to hear back from. We will however meet our obligation from the successful quiz and movie evenings.

Shirley (Community Liaison) has organised a number of social afternoons for people with HD and with assistance from Louise has managed an outing every 3 weeks. These included coffee and cake afternoon, swimming at hospital pool (very popular), movies and a massage therapy afternoon. Food is an important part of the social interaction before people are taken home. Usually five people with HD attend and have a very enjoyable afternoon with lots of laughter.

Shirley Ward leaves shortly as the NZ delegate to the International HD congress and conference.

We are looking forward to seeing everyone at the National HD conference - what a brilliant agenda - congratulations Wellington.

Please note we have a new postal address: HD Association (Chch) Inc, Christchurch Community House, 141 Hereford St, Christchurch.

Regards,
Louise Boyle
Chairperson, HD Assn (Chch) Inc.

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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

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