Issue 103, December 2008
Auckland and Northland News
Jane and I have been very busy since the last newsletter, and if we have not got round to introducing you to Jane yet we will be with you soon.
Back to the top
In September I was privileged to be present at the Christchurch conference, alongside other well recognised and respected speakers, all of whom share an enthusiasm and passion for families with Huntington's, in either management or finding a cure. The conference had a great atmosphere and a very positive theme throughout the weekend. It was great to catch up with colleagues and family members. The Auckland committee would like to send a big thank you to the Christchurch committee for all the hard work and commitment that went into organizing such a successful event.
Then we had an exciting October and we were privileged again with the unique visit from Professor Anne Young MD PhD. She presented a series of public lectures to the Huntington's and Parkinson's communities, as well as specific talks to the neurologists and neuroscience audiences. She also did public lectures in Wellington and Dunedin.
During the course of her career Professor Young has collaborated with New Zealand's very own Professor Richard Faull, the 2007 Rutherford medal winner, who has made outstanding progress in Auckland. They have been close colleagues for over 10 years.
Professor Young was originally one of the key members of the team that initially found the location of the gene for Huntington's disease. She is widely known as one of North America's most respected neurologist, and for the last 17 years she has been the head of the Department of Neurology at Boston's Massachusetts General Hospital.
Professor Young is the Julieanne Dorn Professor of Neurology at Harvard Medical School, where she is leading the research in the field of neurodegenerative diseases. To add to her achievements, she is also a leader in receptor research and has used receptor technology to clarify how various neuronal pathways in the brain react with each other, especially within the parts of the brain that are involved in regulating motor behaviour.
Today she leads a department with nearly 300 physicians, scientists and staff and 36 young doctors that are currently in residency training. The Neurology service has 60 regular hospital beds and a 17 bed Neurology Intensive Care Unit, which last year cared for 20,000 outpatients.
She is the only person ever to have been president of both the International Society for Neuroscience and the American Neurological Association.
Professor Young has been spearheading the drug and DNA research in Boston.
Both of Anne's parents were scientists and she had a love of science at a young age. As the family spent lots of time around the dinner table talking about science she discovered that she was good at it. She found it much easier to study science, rather than a subject where she would have to spend a lot of time reading and doing classical study. This is due to Anne having a visual learning disorder which made her read very slowly, words did not absorb into her brain easily so she took a long time to read. When she was 20 she suffered a brain embolism after being hit by a car. It took her some time to get over this serious condition, however despite this she still managed to wildly succeed in her chosen career.
We are grateful for her ongoing contributions and research in hunting for a cure for Huntington's.
In November I was also fortunate to be asked by the Radius Health Group to present on "the management of Huntington's disease" at their conference in Sky City Auckland.
December is going to be an exciting month thanks to the hard work of our committee. Jane Devine and I will be attending the scientific research seminar in Melbourne on the 5th Dec at the Howard Florey Institute. Whilst there we will take the opportunity to meet our colleagues at the Victorian Huntington's Association. We will also visit the Arthur Preston Residential Services, which is a Huntington's Disease in-patient facility where we meet with Dr Richard Roxbrough and Dr Andrew Churchyard.
The main priority of the Auckland Huntington's Association is to promote awareness and education on Huntington's and offer home visits to the Auckland and Northland families. Although this keeps Jane and me extremely busy please do not hesitate to contact either of us if you have any queries or concerns
We will feedback to our families on the conferences in Christchurch and Melbourne via our carers days, AGM and home visit.
We will be getting a copy on video to show to families that where unable to attend Professor Young's lectures.
On behalf of the Auckland Huntington's Association, I would like to take this opportunity to wish you all a very merry Christmas and a prosperous New Year.
Here at MS Waikato we have been busy. September is Awareness Week (for MS) and Carnation Day, and Hamilton had a 2 day Disability Expo. This has been going for a few years now and is growing each time. If you can get to next years one it is worthwhile.
Back to the top
We also got to go to the HD Conference held in Christchurch. This was really great and I would like to thank all of the committee for their hard work in organising it. Thanks also to all the speakers for sharing their knowledge and stories.
Our Christmas dinner is on the 2nd of December and I am looking forward to seeing lots of you there.
I am taking a break over summer to go camping with my family so don't forget to make contact with your GP if you have problems.
Wishing you all a Safe and Happy Festive Season from the team at MS Waikato and myself.
(Covering the following Wellington Huntington's Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
Our Wellington Advisor, Caz Livesley, has resigned and returned to her nursing career. Caz was very well accepted by our Wellington Huntington's families and will be missed by them.
We are thrilled however to announce that Jeanette Wiggins, also a nurse, has accepted the position as Caz's replacement and is currently commencing training prior to starting her family visits which may not begin until January. Jeanette is presently completing her employment at a local rest home but is looking forward to her new role with the Wellington Association and will introduce herself in our next newsletter.
Our two workers, Tanya based in Hawkes Bay, and Annette based in Manawatu/Wanganui/Taranaki, held a Carer's Retreat at the Camelot Motor Lodge in Palmerston North on 1st and 2nd November.
The retreat, attended by family carers from throughout the lower North Island, was a great success. Many problems and ideas were shared. Time to relax with a meditation session and a fun time at the ten pin bowling alley also preceded a huge meal at the Lone Star Restaurant and watching the All Blacks beat the Wallabies in the rugby test in Hong Kong completed a very enjoyable day.
At our AGM in October, we were pleased to announce that Dorothy Tortell, QSM, Dip Social Work, Dip Physiotherapy, has accepted the position of Patron for the Wellington Association. Dorothy is very well known to all in the Huntington's community, and with her wealth of knowledge and experience she will continue to be invaluable to Huntington's families, carers and health professionals, and to the committee
Several HD family members and health care professionals from the Wellington region were able to attend the Conference in Christchurch in September. We wish to thank the Christchurch committee for organizing this very successful Conference which was a wonderful networking opportunity for all to share their experiences in coping with HD and it is promising to hear the ongoing developments in the search for a cure for the condition. Our committee would also like to thank NZ Care Group for their generous financial assistance to enable some Wellington family members to travel to Christchurch for this event.
I hope that all goes well with you and your families over the Christmas period and all the best for the New Year.
New Plymouth, Wanganui and Palmerston North
The Caregivers retreat was held in Palmerston North the first weekend in November. We had 12 caregivers attend the weekend which went exceptionally well. There was time for chats, good food, ten pin bowling with lots of fun and relaxation for all.
This retreat happens once a year to give carer's a much needed break and to be able to meet up with other people walking the same road as themselves. The carer's report that this weekend is of huge importance to them as it shows them that they are not alone in what they are going through with loved ones.
My social work services will continue to be tailored to suit the needs of each individual. I am available for home visits, telephone and email support or any other enquiries. I regularly visit rest homes to visit clients but also to educate and support staff which I believe is an essential part of my job.
There have been cases of Norovirus which have prevented some in-service presentations from going ahead but these will be rescheduled for early in the new year. 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.
Now that we have a change of Government I am hoping to schedule an appointment with my local MP Simon Powers to discuss the need for more care facilities for HD sufferers so I will keep you posted on any up-dates.
Christmas is now looming and I hope everyone is ready for the festive season. My scheduled hours over the Christmas period will be less but I will be regularly checking my answer phone and will return any calls as quickly as possible.
Please feel free to contact me at any time should you require a home visit or any other form of support.
Seasons Greetings and Best Wishes to you all
Hawkes Bay News
Back to the top
Hello from sunny Hawkes Bay! During the last three months we have continued to welcome new families to the association and to the one-on-one and group support that we can offer here. Although I only work a few hours a week, I can be very flexible with phone support and family visits. I continue to meet with families in Napier, Hastings, and Central Hawkes Bay. We continue to meet together as a group every six weeks to provide a shared social time and support for each other. I am travelling to Gisborne every three months to visit our families up there.
I was able to attend the Conference in Christchurch in September which was a great opportunity to ensure my knowledge and information is up-to-date to share with families.
The Carers Retreat in Palmerston North at the beginning of November, which brought together twelve carers from around the lower north island, was a wonderful experience for everyone and provided a lot of fun and support. I totally enjoyed this time together and learnt a lot from a group of amazing people and was privileged to be part of it. Annette and I will take the feed-back and our own thoughts and aim to provide an even BETTER retreat next year! Hope to see you there.
We will be having our last group meeting and Xmas Party on 23rd November, all families are welcome. Please feel free to phone me anytime for support and information.
Seasons Greetings and Best Wishes to you all
Greetings form the south ...with the weather getting warmer everyone is enjoying longer days and the anticipation of Christmas not far away. Christchurch was delighted to host the 2008 Huntington's Disease Conference "More Pieces of the Puzzle" in our beautiful garden city in September. This was a wonderful success and it was the first time for a lot of people attending from the South Island.
The benefits of these gatherings have a real ripple effect as people learn and understand more about this very complex disease. Meeting others who face the same daily struggles and who have always got time to listen or offer some advice on things that they have found works.
Over the last couple of months I have had interesting discussions with health providers all keen to be part of ongoing care for people with HD. This is heartening in one way but very frustrating trying to get the ministry to recognise the funding issues that surround this. We are ever hopeful that there is light at the end of the tunnel and that maybe something will come out of all of this very soon.
As we gear up for Christmas I hope that you all have the chance to relax, unwind and take a well deserved break.
From everyone in the south Merry Christmas and the hope of an even better 2009
More Pieces of the Puzzle our 2008 National Huntington's Disease Conference seems so long ago. The hard working committee of 8 spent 18 months planning and organising this event. We received 160 registrations with an even mix of Health Professionals, Careers and HD families.
We would like to thank everyone for their support, all the wonderful speakers, both professionals and family members who shared so willingly with us. Our sponsors who included - J R McKenzie Trust, Neurological Foundation, Pathways, Pub Charity, OfficeMax, Air New Zealand, Lifelinks, ANZ Staff Foundation, Wellington HD Association, Private Individual sponsors and our employers who knowingly or unknowingly provided stationery, photocopying, email and telephone time.
As an association we were delighted with the whole weekend and thank you all for being part of it.