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13 Dec 2017

Issue 100, March 2008

Auckland Committee Update

It's been an incredibly busy seven months in Auckland since our AGM last June. The biggest change for us, and many readers know this already, is that our Family Liaison Coordinator, Jo Dysart, has taken on a new role with the Auckland District Health Board as a Nurse Specialist dedicated to Huntington's Disease. She is now working part-time in that capacity and part-time for us in her old role. This has impacted us in two ways. Firstly, this new role allows her to better care for our clients and their families by offering services only a trained nurse can offer and by opening doors only a nurse can open. Working in a multi-disciplinary clinic with our Psychiatrist, Dr. Finucane and our Neurologist, Dr. Roxbrough has also helped to raise the bar on the quality of care offered in Auckland. As an aside, Jo and I went to the HD World Congress in Germany in September and realised fairly quickly that the multi-disciplinary approach that we are developing is Auckland is exactly where the rest of the world is starting to head. It's nice to be ahead of the rest of the world!

The second way Jo's new position has impacted us is that we now only have 1 part-time Family Liaison Coordinator, with a case load that is bigger than most. To that end we are in the midst of hiring one - two more people to work in that capacity. Applications are open now and Jo and I will be interviewing three - four people mid February. Stay tuned for an update...we'll be sure to introduce you to the new folks prior to seeing new faces in the field.

Speaking of the field...if anyone has seen Jo out and about recently then you've seen her new pride and joy! She is now driving a brand new white Toyota Avensis station wagon. I haven't been for a ride yet, but I'm told that it's so flash that the radio even gives you the name of the song that it's playing! That aside, it is certainly much more appropriate for the work that she does than her old Toyota Celica! So the next time you see Jo be sure to ask her to see it.

If you see Jo in her office after March 1st she will be in different quarters within the Taylor's Road building. We are changing offices with the Epilepsy Foundation to give us more space to accommodate the additional field officers.

The second half of this year will, more than likely, be as busy as the first as the committee has additional plans which can be realised with more field officers and a larger committee. One area I have personally concentrated on since assuming the role of Chair last June was expanding our committee officers, not only in number but in breadth of experience. I am pleased to say that we now have a committee consisting of 9 members, with 1 additional whom we are considering. Our nine members consist of both people affected by the HD Gene as well as some with general experience in business or health care, who saw our committee as a worthwhile way to give back to the community. We now have professional legal as well as accounting and marketing experience from within our ranks along with a trained geneticist (who actually works in a similar capacity to Jo for the Muscular Dystrophy Association) and a researcher. Jessie Jacobsen, one of our patron, Dr. Faull's PhD students agreed to join us a few months ago. You might know from either our AGM or from the New Zealand Herald when she won the Young Scientist of the Year Award in New Zealand for helping develop the transgenic sheep model currently under way in Australia. I personally am very grateful for the variety of experience and commitment represented by this committee.

But new committee members aren't the only new faces around our group. We have also hired a professional fund raiser whom has helped to significantly increase our funding, allowing us to purchase some additional resources which will support Jo and the rest of our field offices, as well as the families directly.

And finally, Vikki Lee Goode, of Goode PR has agreed to become our publicist, pro bono. I've worked with Vikki Lee for six years in a professional capacity and she's done wonders for increasing brand recognition for my company. Vikki, the Chair of Look Good Feel Better, is no stranger to not-for-profit committees. I look forward to working with Vikki Lee to expand public awareness of Huntington's in New Zealand.

I would like to end by saying that I look forward to seeing as many Aucklanders (and anyone else from throughout New Zealand) as possible at our next AGM this June. In the mean time, please know that the Auckland Committee is doing everything we can to assist our clients and their families.


Kim Smith
Chairperson, HD Auckland

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