Newsletter October 2007
In this Issue
Annual General Meeting: The Annual General Meeting and Dinner to formally farewell Gwen Pratten was held at Easts Leagues Club on the 19th September. Attendance was high with over 90 members joining us for this special occasion to pay tribute to Gwen for her contribution to the Association and our family members over the last two to three decades. Thank you to members who made the AGM and Farewell Dinner such a special occasion.
Ray Bellert stepped down from the position of President but will remain on the Committee of the Association. Ray served as President for four years and during his term the Association has continued to grow and be successful. His hard work and dedication to Huntington's families has made a difference for many of us.
Lorraine North, Committee member did not seek re-election as she is relocating. Thank you Lorraine for your valuable input and support to the Management Committee.
I am happy to advise you of the office bearers and Committee members for 2007/2008.
Administration: There have been some changes to our administration base and I am pleased to advise you that Barbara Gray has been appointed Operations Manager of the Association and that Lisa Gordon recently joined the staff as Administration Officer. Barbara Gray, Helen Johnston and Lisa Gordon now make up the Administration team. All are part time; however we have ensured that the office and phones will be manned all working days.
Lisa commenced in her role just prior to the Annual General Meeting and was thrown in at the deep end in assisting Barb with the numerous duties that hopefully resulted in a smooth running and successful evening. Welcome Lisa, I am sure you will find your work both enjoyable and rewarding.
Operational Plan: In July the Management Committee approved a one year Operational Plan from July 2007 - June 2008. To achieve the targets we have set, it is important that we increase our funding base, and to that end a working party has been established, comprising two Committee members, the President, the Operations Manager and a volunteer with extensive experience in fundraising. I will advise you in the next Newsletter of the outcome of these meetings and a plan of action that the Management Committee decides to take.
Fundraising: The Directors of our Telemarketing program recently met with myself, Helen and Barb to discuss ways to improve funding derived from this source. In addition to their ongoing telephone sales the company is introducing a web site for online sales. Please refer to the "Fundraising" article on the back page for further details.
Earlier in the year the Management Committee applied to Jupiters Casino Community Benefit Fund for funding to paint the HD Centre. This application was successful and it is anticipated that the work will be finalised by the end of the year. On behalf of our Management Committee I would like to extend our sincere thanks and appreciation to Jupiters Casino Community Benefit Fund for their generosity.
Mr. Scott Wood, of Action Formwork recently donated to the Association two computers. Scott is a family member and was so appreciative of the support and assistance given to his brother in recent times that he contacted us asking how he could assist the Association. The administration base of the Association had been looking at the possibility of replacing some computers, however we were biding our time until our finances looked a little healthier. Scott, your support could not have come at a better time. Thank you sincerely for your generosity and kindness. We do appreciate it.
Mr Brett Strazzaboschi, of Laser Change very generously provided staff to deliver and set up these computers. Thank you Brett for completing the package and for supporting us through your friendship with Scott. We are so very fortunate to receive this type of community support. Please accept our sincere thanks and appreciation for this wonderful gesture.
Membership: It's time to renew your Membership now. If you have not already done so, I encourage you to return your completed from and fee to the HD office.
Gerry Doyle, President
As this is my last newsletter article I would like to thank the many people who have been of assistance to me during the past four years as President of our Association's Management Committee.
At the Annual General Meeting held at Easts Leagues Club on 19th September, your new president, Gerry Doyle was unanimously voted in.
The last 12 months have seen many positive changes in the makeup of our operational structure and all these changes will mean a better service to people affected by Huntington's Disease.
As you are aware our Welfare Service and administration have been restructured with Julie Morrow and Christine Parfitt providing the best care possible to people directly affected by HD, carers and families.
Barbara Gray has been appointed Operations Manager and she will be supported by Administration Officer Lisa Gordon and Telemarketing Officer Helen Johnson.
These wonderful people deserve everyone's wholehearted support to get the job done.
It would be wrong for me if I did not thank Gwen Pratten for her wonderful contribution over the past 20 years. As you all know Gwen has finally decided to retire. Thank you Gwen for being such a wonderful Welfare Coordinator. You certainly have done us proud.
I also wish to thank Barbara Gray and our administration staff for their devotion and untiring hard work in keeping the wheels turning.
Thank you to Iris Simpson and our wonderful volunteers who have never been found wanting. Without you all our Association would have found it difficult to continue.
Lastly but not least, thank you sincerely to all members past and present of the Management Committee who made my time as President an enjoyable and uplifting experience. I wish the Management Committee and members of the Association all the very best for a successful 2007/2008 and beyond.
Thank you all from the bottom of my heart!
Hello, my name is Christine Parfitt and I am the new full time Welfare Officer. Over the past few months I have been slowly making the rounds, meeting with many clients and their families for a chat and a chance for us to get to know each other. During this time, might I add, my "NavMan" (GPS) has been getting quite a good workout!
To let you know a little about myself, I have worked in the health care sector for the past 10 years. I've worked in nursing homes and hostels as an assistant in nursing, then the diversional therapy and quality coordinators. Most recently I have spent the past two years running a respite centre for frail aged and younger people with a disability, as well as coordinating in-home respite and home help.
I am finding now that I can bring all of what I have learnt in each of these roles to my work today - and knowing a few tricks of the trade doesn't hurt either! But most of all I am learning so much every day about HD from my clients and their families.
Thank you so much to everyone for making me feel very welcome. I can honestly say that I feel a part of a large extended family and I enjoy coming to work every day.
I've been down to the South Coast region a few times and went along to the Family Support Group which was great. What a wonderfully warm and welcoming group of people we have there.
The Family Support Group meet at the South Tweed Bowls Club every six weeks or so, so if you live down that way you are more than welcome to join us for morning tea (which turns into lunch, which turns into "oh my gosh look at the time!"). I've also been out to Toowoomba many times (what a beautiful drive this is!) and we had a great turn out at the Family Support Group held at the City Golf Club. Once again, another group of wonderfully warm and welcoming people who would be more than happy to add to their numbers. If you'd like some information about either of these groups please give me a call.
I've also recently completed my first regional trip which was to the Bundaberg Coast. The hospitality I received from all the lovely people I met was overwhelming and I'm looking forward to many more trips to this region and the other regions including Rocky/Mackay and Burnett in good time. Although, can I just add that I have to wonder if the town planners were slightly imbided on the Bundy rum when they numbered the streets, because how one side of the street can be number 180 and directly opposite be number 50 is beyond me!
As you can see, I have been clocking up the kilometers and it takes time to get out and about to meet everyone. So if I haven't called on you yet, rest assured you'll hear from me soon. Please remember that you are always welcome to call me at the office if something crops up or if you'd just like to say hi! I'm looking forward to catching up with many more of you over the time to come.
I commenced with the Association at the beginning of September having worked in various positions in the corporate world prior to this. The staff, clients, carers and families have welcomed me with open arms.
I was fortunate to be involved with this years Annual General Meeting and Dinner and this gave me the opportunity to meet "some of my extended family". This evening was very enjoyable and successful.
It is absolutely wonderful and uplifting to see the passion, enthusiasm and energy displayed by so many staff, families, carers and volunteers to support those affected by Huntington's Disease. I admire each and every one of you.
Lastly, I would like to say thank you to Barbara, Julie, Christine, Helen and the Management Committee for supporting me since I commenced with the Association. I look forward to a rewarding, exciting and long association.
Aged Care facilities have been the primary providers of high-level residential care for people with Huntington's Disease in Queensland. The placement of younger people in nursing homes remains a key issue affecting our families. In fact anyone under 65 years of age would be considered a younger person in a nursing home.
The decision to place an elderly relative in an aged care facility is often a very difficult life choice for family members. But the decision to place a younger relative in an aged care facility can be even more difficult and complex. Whilst people's physical needs may be met, families are often concerned about whether the social, emotional and lifestyle needs can be provided to meet the quality of care suitable to their life stage. Likewise, many nursing homes are concerned that a younger resident may not be happy if they cannot provide the age appropriate stimulation or more individualised support and flexibility to meet the needs of a younger person.
Despite these concerns, nursing homes will continue to be an appropriate option for high-level residential care for some of our family members. Our Welfare Service will continue to support nursing home staff through visitations and information to assist in the provision of a high quality of care.
However, the Association has always been concerned about the lack of high level care options available and where possible has advocated the need for support options more suitable to the care needs of young people with Huntington's Disease.
On 10th February, 2006, this social issue received commonwealth recognition when the Council of Australian Governments (COAG) handed down their decision to provide funding towards meeting the care needs of younger people.
Since then the Commonwealth and State governments have each committed $23.9 million in funding over a five year period to reduce the number of younger people with a disability living in residential aged care facilities. This money has been provided to Disability Services Queensland (DSQ), through an initiative called 'Younger People in Residential Aged Care' (YPIRAC).
YPIRAC aims to address three areas.
To achieve these aims, YPIRAC have developed five models of support including:
If you would like to find out more about YPIRAC and/or discuss a family member's eligibility, the YPIRAC team can be contacted on:
*These contact details are the same for regional families.
Christine and I will be happy to assist with completing the 'Registration of Interest' form if needed.
Since our last newsletter, the most significant change in the Welfare Service has been the appointment of Christine Parfitt as the full time Welfare Officer. By now many of you have already met her.
It has been wonderful to have Christine on board and since joining us in July she's been very busy meeting people and generally getting a handle on her new role.
Our Welfare Officer role is very broad and needs to be flexible to meet the varied needs of our families. Some of the more practical support the Welfare Service provides includes assistance with organising respite care, in-home support, residential care and transport options. On-going information provision about Huntington's Disease is an important part of our role with families, health professionals, care providers and students. In addition, we are involved in regular regional visits and organising respite holidays, family visits, outings, family support and carer groups.
One of the more time consuming aspects of our role is keeping up to date with available community support and health services throughout the state, as well as keeping abreast of the broader issues affecting health care and disability support and remaining up to date with sister organisations, at a national and international level.
On this last note, the World Congress for Huntington's Disease took place in September, in Dresden, Germany. We will be able to provide an update of this important bi-yearly conference in our next newsletter.
In the last couple of months, we have completed regional visits to Cairns, Toowoomba and Bundaberg. Before the end of the year, we have plans to visit Townsville, Rockhampton/Mackay and the Burnett regions. During these visits, we endeavor to visit as many people and facilities as possible.
Carers Group (Brisbane)
At our last carer's group, Elaine from Carers Queensland facilitated a session on self-care. Dates for the carers group for the remainder of the year are:
Our carers group usually runs from 10am till 12pm. All carers are welcome. Please advise if you are able to attend so arrangements can be made for transportation and catering.
I would also like to welcome the Parkinson's Queensland Carers Group who have started holding their meetings in our day centre area.
"Talking it Over with Someone who Cares"
For more information phone the Commonwealth Carer Resource Centre Monday to Friday 9am to 5pm
1800 242 636*
*Free call except from mobile phones, mobile calls at mobile rates.
The National Carer Counselling Program in Queensland provides:
Modes of delivery:
Counselling, Information and Support
Powerful New MRI Boosts Advanced Imaging
Neuroscientists at the Queensland Brain Institute (QBI) are astounded at the detail available to them in brain images being generated by UQ's new Magnetic Resonance Imaging (MRI) spectrometer.
QBI Director Professor Perry Bartlett said the new MRI represented a quantum advance in brain-imaging technology.
"This is an extremely exciting development. We've learned a lot about how the brain works from a biochemical and molecular approach, but we've never been able to look in detail at what is really going on inside the brain as it functions", Professor Bartlett said.
"This imaging capability will allow us for the first time to rapidly identify and really interrogate the mechanisms controlling brain function and apply these discoveries to the treatment of disease.
"It places Queensland at the front of the pack&leading the world in discovery in this area".
Professor Bartlett said QBI scientists were using the technology to look at molecules they believed would help with the regrowth of damaged nerve cells following trauma such as spinal cord injury.
"If this proves successful in animal models we could conceivably go to trails within the next 18 months to two years" he said.
"Imaging technology such as this is vital if we are to address the overwhelming incidence of neurological disorders in the community".
PHOTO: An advanced imaging spectrometer, which will keep Queensland neuroscientists at the technological forefront of brain imaging around the world.
Located at The University of Queensland's Centre for Magnetic Resonance (CMR) and purchased with the assistance of Qld Government Smart State Funding, the new 16.4T MRI wide-bore spectrometer is one of only six such machines in the world.
CMR Acting Director Professor Ian Brereton said the technology enabled scientists to obtain exquisitely detailed images of intact biological specimens, at spatial resolution approaching the cellular level.
"This instrumentation is a key addition to the imaging capacity being built at this university to support major initiatives in molecular imaging, cognitive and anatomical neuroscience, biomarker development and nanotechnology," Professor Brereton said.
"As part of the Queensland NMR Network, these world-class facilities will provide all researchers throughout Queensland and the region with access to state-of-the-art imaging technology and expertise."
Among the many benefits expected to flow from long-term application of this technology include the:
Research under way at the Queensland Brain Institute is vital to the development of treatments for dementia, stroke, Motor Neuron Disease, Multiple Sclerosis, Huntington's, neurotrauma, spinal cord injury and depression.
Acknowledgement: Reprinted from Queensland Brain Institute, qbi neuroscience news, Issue 3, August 2007
If you recently completed a twelve-month follow-up questionnaire regarding the economic impact of HD on well-being, we would like to tell you a little more about the next phase of this research project.
During 2007, we will be conducting the third and final stage of our research project, which is looking at the economic impact of HD on well-being.
Participation will consist of an in-depth interview of about 30 minutes to one hour in duration, with a member of the Deakin University project team. The interview will focus on both the internal (e.g. coping style) and external (e.g. financial resources) factors involved in living with HD. The interview will be conducted over the phone.
The results of this phase of the research project will inform the industry partners on the nature of intervention strategies, educational programs, and financial assistance/counselling to be employed to assist their clients in adjusting to the economic impact of HD.
We require a small number of interested individuals or couples living with HD to volunteer to participate in a telephone interview. To express your interest in participating, please phone Eloide O'Connor on (03) 9251 7258 or email [email protected].
At this point in time, we are only seeking an indication of your interest in participating in an interview. Registering your interest does not oblige you to participate, and in addition, we will only be contacting a small sample of those who do express interest, as we only require a total of 12 individuals or couples to participate.
Milton Wexler, who died on March 16 aged 98, set out to find a cure for Huntington's Disease after his ex-wife, the mother of his two daughters, was diagnosed with the disorder; his efforts bore fruit in 1993 when scientists identified the faulty gene which causes the disease.
Huntington's Disease is an inherited genetic disorder, which causes the premature death of nerve cells in the brain, triggering an inexorable mental and physical deterioration. As the disease progresses, movements become uncontrollable and sometimes violent. The first symptoms generally appear in the middle age; one or two decades later, the patient dies. People with a parent affected by the disease have a 50:50 chance of developing it themselves - and of passing it on to their own children.
Leonore Wexler's father and three brothers had died of the disease, but she had believed that it only afflicted men. In 1967, however, she was crossing a Los Angeles street when she began to jerk and stumble. A policeman stopped her and inquired why she had been drinking so early in the morning. Subsequently a neurologist confirmed what she most feared. She had the disease, and therefore her two daughters had an even chance of developing it too.
Devastated by the news, Wexler, a prominent Hollywood psychoanalyst whose clients included Blake Edwards and the architect Frank Gehyr, got in touch with the widow of Huntington's most famous victim, the folk singer Woody Guthrie. She had formed an organisation to campaign for research and he decided to set up a branch in California. Wexler's group became the Hereditary Disease Foundation, an organisation dedicated to researching causes and cures for Huntington's Disease and similar inherited disorders.
Helped by his daughter Nancy, a clinical psychologist, Wexler set about finding bright young geneticists, neurologists and psychologists to research the disease, offering them free travel and a $1,000 inducement fee. They convened at freewheeling "brainstorming" workshops, modeled on psychiatric group therapy session. As well as the research scientists, the sessions attracted leading thinkers such as the Noble laureate James Watson. Wexler's Hollywood clients gave generously to the foundation and hosted parties at which young scientists would rub shoulders with such stars as Walter Matthau, Jack Lemmon and Carole Burnett.
In 1972 Wexler heard about a village in Venezuela that had been riddled with Huntington's for generations. Subsequently Nancy Wexler set up a research project there, in the hope that studying several generations of families with the disease would give scientist a chance to examine the DNA of those who had the disease and those who had escaped it. With her sister Alice, an historian, she made several trips to Venezuela, taking samples and charting family histories. Eventually they traced the disease back to one woman whose descendants numbered some 9,000 people.
In 1983 a molecular geneticist at MIT, working on blood samples sent from the Venezeulan project, achieved a breakthrough few scientists had believed possible when he located human chromosomes that contained the Huntington's Disease gene. A decade later the gene itself was identified.
The discovery was hugely significant, not only because it enabled the development of pre- and post-natal predictive testing for the disease, but for genetic research more generally. It demonstrated that it might be possible to map the entire human genome - a task that was eventually completed in 2003.
Milton Wexler was born in San Francisco in 1908 and grew up in New York City, where he trained as a lawyer before switching to Psychology. After taking a doctorate at Columbia University, studying under Theodor Reik, a disciple of Freud, he became one of the country's first non-physicians to set up in practice as a psychoanalyst. In 1946, after wartime service in the US Navy, Wexler joined the staff of the Menninger Foundation in Topeka, Kansas, a research and treatment centre where he became known for his success in treating schizophrenics. When his wife's three brothers were diagnosed with Huntington's in 1950, he moved to Los Angeles and established a more lucrative private practice so that he could support them.
Wexler became a pioneer of group therapy and his sessions attracted writers, artists and Hollywood stars, including the director Blake Edwards, with whom he collaborated on the scripts of The Man who Loved Women (1983) and That's Life! (1986). When George Segal pulled out of 10, Edwards found his replacement, Dudley Moore, at Wexler's therapy group. It was also at one of Wexler's sessions that the architect Frank Gehry felt he had discovered what was holding him back in his career, when fellow members of the group told him that they took his shyness for hostility.
The obvious symptoms of Huntington's Disease are often preceded by a period during which the victim suffers depression, irritability, obsessive-compulsive thoughts and memory lapses. In the 1950s Wexler's wife, Leonore, once an outgoing, bubbly woman, began showing symptoms of depression and withdrawal and even attempted suicide. He divorced in 1962; in retrospect, Wexler realised that the early symptoms of Huntington's had destroyed their marriage.
Though the discovery of the Huntington's gene enabled the development of a test for the condition, Wexler's daughters decided not to take it, deciding that they did not want to know. They had decided not to have children when their mother was diagnosed with the disease. Leonore Wexler died in 1978, 10 years after diagnoses. Milton Wexler's daughters survive him.
Acknowledgement: Reproduced by kind permission of the Daily Telegraph
Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors;
Please find enclosed forms for this year's Cookie Drive. This is a wonderful opportunity to purchase some delicious biscuits and to support the Association. Please return forms and monies by no later than 2nd November 2007,