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
SUE WATKIN MBE
We are delighted to share the news with members that Sue Watkin, our previous Chair, was awarded an MBE in this year's New Years honours list; in recognition of her outstanding contribution to the HD community.
This is a well deserved award: Sue became Chair of the Huntington's Disease Association in 1992 handing over the reins to Carole Carruthers our present Chair in 2002. During that time Sue worked tirelessly bringing the Association to the healthy and vibrant position we find ourselves today. She was instrumental in developing the Regional Care Advisory Service, which over the years has grown to 24 RCA posts.
Sue is respected throughout the HD world both nationally and internationally and I'm sure those colleagues who have worked closely with her, along with all our members join with us in sending our congratulations and best wishes to her and her family at this special time.
Congratulations can be sent via HDA: [email protected]
Acknowledgements: Article published in the Huntington's Disease Association Newsletter, United Kingdom.
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.
Senior Welfare Officer
15th November - Iris Simpson will provide an update on The World Congress for Huntington's Disease
12th December - Christmas Lunch
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:
Short-term counselling delivered by qualified, professional counsellors operating within legal and ethical responsibilities.
a service that targets specific needs of carers
a Statement of Rights & Responsibilities
a quality counselling service provided by established counselling services within QLD
a safe, non-discriminatory and non-judgmental environment
a referral process easily accessible by carers
complaint handling procedures
Modes of delivery:
telephone & face-to-face counselling for young carers
Counselling, Information and Support
1800 242 636
ABN 20 061 257 725
Individual membership to Carers Queensland is FREE for the 2007/2008 financial year, so why not sign up! Existing memberships have been rolled over automatically. Renewal forms have not been issued, so if your contact details have changed please contact Carers Queensland with your updated information.
LOW COST INTERNET AVAILABLE
People with disability and frail aged throughout Australia can access a low cost internet service thanks to a partnership arrangement between Technical Aid to the Disabled Australia and IPSOne - a Victorian based internet service provider. The partnership enables dial-up internet access at $5.50 a month, after an establishment fee of $36.00, and offers unlimited downloads and flexible contact arrangements.
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:
Capacity for scientists to study brain function at the cellular level, allowing researchers to image at high resolution, and better understand how memory and learning are regulated
Development of improved diagnostic procedures and treatments for sufferers of neurological disorders ranging from dementia to Motor Neuron Disease
Opportunity to study tissue from stroke and other neurological disease models
Development of new imaging protocols and markers to study cell function and movement, and
Capacity to conduct clinical trials in the animal model, a vital step in the development of safe therapeutic treatments for humans.
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
Reprinted Huntington's Disease Association United Kingdom Newsletter June 2007
Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors;
Adventist Retirement Village Social Committee
M & R Bowhay
D & S Carrick
BA & MJ Collins
IL & RL Craig
Eileen Wallace Trust
B Jannusch and family
Lions Club of Brisbane Bunya Inc.
G & M Mayne
AJ Parkes & Co Pty Ltd
NG & G Salter
B & C van Heel
ID Whitehouse and family
Woolworths Ltd - Buranda
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,
Unit 8, 22 Palmer Place
Toll free 1300 66 44 24
Thanks for your support
599 Mainmyrtletown Road
Email: actionfo[email protected]
Thanks for your support