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Staff UpdateWe are pleased to welcome 3 new staff members:
Ingrid, Kirsten and Ramona are excited to join the Association and look forward to working with both Sasa and Lily to further the services provided by the Association.
Potential Treatment for Huntington's DiseaseScienceDaily (Nov. 16, 2009) — Investigators at Burnham Institute for Medical Research (Burnham), the University of British Columbia's Centre for Molecular Medicine and Therapeutics and the University of California, San Diego have found that normal synaptic activity in nerve cells (the electrical activity in the brain that allows nerve cells to communicate with one another) protects the brain from the misfolded proteins associated with Huntington's disease. In contrast, excessive extrasynaptic activity (aberrant electrical activity in the brain, usually not associated with communication between nerve cells) enhances the misfolded proteins' deadly effects.
Read more at the ScienceDaily website
Protecting the Brain from Huntington's DiseaseIn a new study published in The Journal of Neuroscience, Stephen Ferguson and Fabiola Ribeiro of Robarts Research Institute at The University of Western Ontario identified a protective pathway in the brain that may explain why HD symptoms take so long to appear. The findings could also lead to new treatments for HD.
Changes in the Huntington Disease ServiceBy Dr Elizabeth McCusker
From 1 September 2008 I will take long service leave. Dr Clement Loy who has worked with us in the Huntington Disease service as Movement Disorders Fellow has been appointed as my locum and will be assisted by Dr Kaitlyn Parratt, the current Movement Disorders Fellow. On my return in November, I will be stepping aside to a one day a week Huntington Disease Research position at Westmead Hospital in the Huntington Disease Service. This will enable us to take advantage of more research opportunities, especially those projects run by the Huntington Study Group including COHORT, PREDICT HD, 2 CARE and others. The HD Association supported the establishment of the position.
After over 20 years it is time to make a change to ensure the continuity of our service. My current position as Director of the HD service and Neurologist in the HD clinic and to the Outreach team and the Lottie Stewart unit has been advertised and we await the appointment of my replacement. It has been an absolute privilege to be involved with Huntington Disease patients and their families as well as the staff of the Association our service and the people in the world wide HD community.
I am determined to continue to work with our research team on projects aimed at finding the cure or a means of delaying onset. It is far too difficult to say good bye to so many extraordinary people, many that I have known for years. I heard a carer say once, ‘I would never have chosen to walk this route but I have certainly met some amazing people along the way’. I couldn’t agree more.
(Added: 21 October 2008)
Introducing Jet AseriosIn May this year, Jet Aserios commenced his employment with the Huntington's Disease Service as a full-time Social Worker. Prior to joining the service, Jet worked as a Defence Social Worker based at RAAF Richmond and Liverpool Military Area. He holds an undergraduate and Master's degrees in Social Work and is currently an Accredited Member of the Australian Association of Social Workers (AASW).
Jet can be contacted at Westmead Hospital on (02) 9845 7528.
(Added: 21 October 2008)
A Very Multicultural Social ClubSome of you may not be aware that we have a Social Club Program at our Centre every fortnight for people with Huntington's Disease (HD). The program is based on a person-centred, social model of care. Every quarter the clients and staff discuss and plan future activities and try to keep in contact with our community, as well as national and international events.
For example, Lily and I went all out and developed a great program to celebrate NAIDOC week. In fact, a couple of clients enjoyed it so much they wanted the manual so that they could show the two clients who could not attend on the day what they missed. The activity in the morning looked at the history of NAIDOC; the 'Dreamtime'; the heroes of the struggle for ATSI (i.e. Aboriginal &Torres Strait Islander) rights; their art, artefacts, music, dance and other cultural aspects. We reminisced about our interaction with ATSI friends. After lunch we played ATSI games and clicked and clacked to the sounds of the didgeridoo. The recreation room was surrounded by posters; the Aboriginal, the Torres Strait Islander and Australian flags; placemats and other ATSI paraphernalia.
Our most recent club celebrated the Beijing Olympic Games 2008. This included a variety of Chinese displays such as the five Chinese Luck Doll Mascots; Chinese lucky charms hung from the walls to wish all the contestants "good luck"; two Chinese racing boats brought extra colour to the area; posters and large coloured newspaper headlines with photos of various successful contestants along with flags of the various participating countries. Clients represented their heritage backgrounds such as Greece, Denmark, Australia, England, France, Scotland, China, and the Netherlands. They waved their individual flags and chanted for their team member. Lily supplied the Chinese articles for the display and dressed in her Chinese clothes for the occasion. Like Beijing the AHDA Social Club members once again exceeded themselves!
(Added: 21 October 2008)
Sydney Carers Support GroupThis Group is starting up in September. Check the Carer's Page for more information.
Vale Maria MackellIt is with great sadness that we report the death in hospital on 7 August 2008 of Maria Mackell, the Association's much loved Carer Support Coordinator.
"You extended a caring hand, and made a difference to so many."
Our sincere sympathy goes to Roger, Hillier and Austin.
Read our tribute to Maria.
(Added 24 August 2008)
Annual General Meeting 2008SATURDAY 29 NOVEMBER 2008 2.00PM — 4.00PM
West Ryde Hall - 1A Station Street, West Ryde
Refreshments will be served. Non members welcome
Guest Speaker: Dr Elizabeth McCusker, Speaking on 20 years of Change and Progress.
Please RSVP (for catering purposes only) by mail, telephone or email.
Note: You must be a financial member to be able to vote.
Nomination forms for the Office Bearers and Board elections are available upon request. Please contact the office if you need some sent to you. Nominations may also be made at the meeting. Completed forms should be returned no later than Thursday 20 November 2008.
AGENDA
(Added: 21 October 2008)
Participation by Country MembersWhilst any member of the Association is eligible for election to the board of management this is a somewhat unrealistic option for country members due to the travelling time and expense involved in attending meetings in Sydney. At its June meeting, the board agreed to investigate medium-term options for facilitating the involvement of country members on the board. This may involve looking at things such as telephone and video conferencing.
Later this year the board will be holding a "planning day" to develop objectives and strategies for the following year's work. This will probably be held on a Saturday or Sunday in Sydney. The board is prepared to pay the travelling expenses of one or two country members who would like to participate in this planning day.
If you feel that you can contribute to the planning day (whether you live in Sydney, Canberra or the country) you are invited to register your interest by contacting the Executive Officer.
Happy Holiday!Eight people with Huntington's Disease and four carers attended the holiday Camp at Camp Breakaway between the 1st and 4th of April. As usual, a great time was had by both clients and the staff. The camp was a little less demanding of the staff than previously as we utilised the services of Camp Breakaway for the catering for the first time. Special thanks go to: Karen Bevan, who came as a volunteer to perform her previous role as organiser of the camp activities, and Heather Armstrong who also volunteered her time to this camp.
