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Newsletter May 2003
In This Issue
- President's Message
- World Congress
- From the Welfare Staff
- Information for Carers
- Questions & Answers
- Genetic Testing for HD
- The AKT Pathway
- 20th Anniversary
- Worth Thinking About
- Fundraising
- For Your Diary
Dear Friends,
As President of your Association, I would like to draw your attention to the work that has been carried out by Iris Simpson over a period of 12 years.
During this time Iris has been employed as a Projects Officer with Queensland Health and has, among many other tasks, coordinated and facilitated Day Respite Programs for HD clients. The inaugural Day Respite Program in Queensland was held at Caboolture and later relocated to Aspley. In recent times Iris ran a Day Respite Program at Coolum for 12 months. This year has seen the closure of both the Aspley and Coolum Programs due to transportation constraints.
I would like to express on behalf of the Association a very special thanks to Iris and her willing and loyal band of volunteers for the pleasure and support they have given to so many families. Iris continues in her role as Projects Officer supporting families confronting HD issues and we appreciate her dedication and commitment. Iris can be contacted on (07)3263 0869.
Gerry Doyle, President
HUNTINGTON SOCIETY OF CANADA HOSTS THE WORLD
In August 2003, Toronto, Ontario will be home to the World Congress on Huntington's Disease, co-sponsored by the Huntington Society of Canada, the Huntington's Disease Society of America, the Hereditary Disease Foundation, the International Huntington's Association, the Huntington Study Group, and the World Federation of Neurology.
The World Congress on Huntington's Disease (HD) is a newly-structured meeting of the World Federation of Neurology (WFN) Research Group on Huntington's Disease and the International Huntington Association (IHA). Traditionally these meetings are held every two years.
For the first time in the history of this biennial meeting, a scientific program that is open to researchers and HD organizations is being offered. The first part of the meeting - normally the meeting of the World Federation of Neurology - includes a scientific program with presentations on genetics, drug discovery and development, how HD develops in the body, the latest advances in therapeutic areas, clinical trial results, future clinical trials, public policy, and education. Researchers, professionals, and members of the HD organizations will definitely find the sessions rewarding.
After the main scientific sessions (August 16-19), the IHA will meet for two additional days (August 20-21). The meeting will feature updates and reports on the work of IHA member organizations, the Annual General Meeting (AGM) for the IHA, as well as featured presentations related to the dynamic work of IHA members. You can learn more about the program for the Congress by going to the Huntington Society of Canada's Web site by clicking on this link:
The World Congress on HD - 2003.
In this Newsletter, I would like to discuss the important and often sensitive issues involved in planning for the future when someone in the family is affected by HD. Please note that not all topics will be relevant for everyone, but it is important to know what options are available for people with HD and their caregivers. If you have any queries regarding the information provided or would like to discuss your individual requirements, please do not hesitate to contact any of the welfare staff at the office.
Planning ahead
There are a number of legal arrangements that may help you plan for the future and put your affairs in order. Planning for the future will be different for everyone - for example, it will vary depending on abilities, views and age. Planning ahead is vital for everyone, including those affected by HD and those in the caring role.
Why is it important to plan ahead?
Making legal arrangements can sometimes seem daunting - there are a lot of complex legal terms that need to be understood. Some people find it difficult to plan ahead - planning for illness and death may seem morbid, or to be inviting bad luck, and finding the time to make necessary arrangements can be easier said than done. But, it's worth it. Once arrangements are made, you can stop worrying and have some sense of security and peace of mind about the future. If possible it is best to get organized early before the need becomes urgent. It may help avoid difficult situations, especially at times of crisis or emergency.
What needs to be done to plan ahead successfully?
A good place to start planning ahead is to write a will. A will is a legal document that enables you to exercise your right to select the people or organizations you wish to inherit your estate. If you die without a will, your assets will be divided according to a formula set out in government legislation.
You can make your own will, but you must make sure it is very clear or there is a risk your wishes won't be carried out. Alternatively, a solicitor is able to assist in drawing up wills. It is important to ensure you keep your will up to date and that someone you trust knows where the will is kept.
It is also a good idea to ensure trusted family members or friends are aware of the location of other important documents like birth and marriage certificates, property deeds or lease arrangements, insurance policies and details of bank accounts and other investments or debts. These documents should all be kept together in a secure place.
Managing someone's finances
It may become necessary for a loved one or friend to assist in managing the finances of someone unable to do so themselves. There are some legal arrangements that may help in such instances, but specific requirements will depend on individual situations.
Power of Attorney
A Power of Attorney gives a nominated person the power to act on another's behalf with regards to financial matters. This can be for all financial matters, or just for some. This arrangement can mean that essential matters are attended to by a trusted person at the right time. A Power of Attorney may be cancelled at any time as long as the person is of sound mind.
An appointed Power of Attorney would be able to do specified things such as managing bank accounts or paying bills. For example, if someone has lost the ability to sign documents as a result of HD, an appointed Power of Attorney could help manage financial affairs and sign on their behalf.
Enduring Power of Attorney
A Power of Attorney is only valid while the person who gives it is of sound mind. An Enduring Power of Attorney enables someone to continue managing another's affairs even if they are not able to understand the implications. However, the Enduring Power of Attorney can only be given while the person is able to understand what they are doing.
It's a good idea to appoint an Enduring Power of Attorney, so that if anything happens to you, someone you trust can make arrangements for you.
Power of Attorney and Enduring Power of Attorney forms are available from GoPrint offices, WC Penfold Stationers and most newsagents throughout Queensland. The HD Office at Annerley also holds copies of these forms for purchase by our members.
Guardians and Administrators
Each state and territory has a Guardianship Board or Tribunal which can appoint a guardian or administrator for an adult who is not able to make decisions for themselves. A guardian is able to make lifestyle decisions such as where a person should live. An administrator can then be responsible for the person's finances. The Guardianship Board or Tribunal then supervises the management of the person's affairs.
A Guardianship Board appointment may be useful if there are problems dealing with the affairs of someone, or if there is conflict in the family about a person's best interests.
Advance Health Directive
An Advance Health Directive is a document that states a person's wishes or directions regarding their future health care for various medical conditions. It comes into effect only if you are unable to make your own decisions. Before making an Advance Health Directive, a person should clearly consider what they would want their medical treatment to achieve if they became ill. It is strongly recommended that a discussion with a doctor is held before completion of this form.
Completing an Advance Health Directive allows family and friends to understand your wishes for your future health care needs. At a time of medical crisis, it can be very reassuring for loved ones to know your medical wishes and without an Advance Health Directive, loved ones are forced to make difficult decisions on your behalf.
Advance Health Directive forms are available from GoPrint offices, WC Penfold Stationers and most newsagents throughout Queensland. The HD Office at Annerley also holds copies of these forms for purchase by our members.
Where can I get more information on planning ahead?
The following organisations are available to assist:
Commonwealth Carer Resource Centres - 1800 242 636
Veteran's Affairs Network - 1300 551 918
Aged and Community Care Information Line - 1800 500 853
Additionally, Welfare staff at the HD office are always available to assist in providing advice on any of these topics, please contact us for more information.
Acknowledgement: Information supplied by the Queensland Council of Carers Inc.
Kellie Chenoweth
Welfare Officer
INFORMATION FOR CARERS
Carers are people who look after somebody who needs help to live at home. They may be someone who is very sick, or has a disability.
Taking Care of Yourself - Carers are usually family members who provide support to children or adults who have a disability, mental illness, chronic condition or who are frail aged. Carers can be parents, partners, brothers, sisters, friends or children of any age.
Carers may care for a few hours a week, or all day every day. Some carers are eligible for government benefits, while others are employed or have a private income.
Although it can be difficult, you need to consider your own needs as well as those of the person you are caring for. If your health begins to suffer, caring will become more difficult and it will not be easy to continue doing all the things that you need to do. You may even be unable to continue caring.
'All I can say is tired, tired, tired.'
? Why should I bother?
Caring may make many demands on you. Looking after your own physical and emotional health will help keep you going.
'Carers must think of themselves first - because if they have to give up, there will be no carer.'
? How can I take better care of myself?
These general guidelines and tips about how to take better care of yourself have worked for other carers.
Getting out - Try to continue with activities that you enjoy. Even though the many demands of caring can make it difficult to manage, it is really important that you follow your own interests outside the caring role.
Some carers say that they feel guilty when they leave the house, or enjoy an activity without the person they are caring for. If you are finding it difficult to get out and about, talk to someone about how you are feeling.
Knowing you're not alone - It's easy to become isolated when you are a carer. You might be too busy to keep up with friends and family. People may visit you less often. Loneliness can be one of the worst side effects of being a carer. Sometimes just talking to someone who understands what you are going through can be a great relief. Sharing your experiences with someone you trust - family, friends, neighbours, other carers or workers - can help.
It often helps to talk to people in the same situation. Your Carer Resource Centre and support groups can put you in touch with other people who share similar experiences. When ideas, feelings, concerns, information and problems are shared, the experience of caring can seem less isolating. You can contact your Carer Resource Centre on 1800 242 636 (free call).
'It is important that you don't feel alone - especially for those people who don't have family members to give help and support.'
Keeping healthy - Try to make sure that you are:
- Making time for regular exercise. This will make you feel more energetic and provide a break from your daily activities.
- Having healthy, regular meals. It is not always easy to do, but it is important for your long term health.
- Getting enough rest and sleep. Tiredness and exhaustion often add to the stress of caring.
- Looking after your back if you need to lift, or transfer the person you are caring for. Get professional advise on the safest way to lift and any available aids to assist with lifting.
- Talking to your GP about your caring role and the demands it makes on you.
'Don't sit back and let others take over - remain involved. Look ahead - not back.'
Taking breaks - You cannot care constantly without a break. Even though it's often not easy to do, ask for help. Ask family and friends and respite care services to help you have regular and frequent breaks. The sort of break you take will depend on what suits you, and the person you are caring for, as well as the services that are available in your area.
Breaks can be taken in your house, or away from it. They might be for a few hours, a day, overnight or longer. It might mean that you go to an exercise class, attend a wedding, catch up with friends or family, or go on holidays. It can be a regular weekly event or something that happens only once a year.
Contact your local Carer Respite Centre on the free call number 1800 059 059 to discuss what respite options are available for you and the person you are caring. You can also contact your Carer Resource Centre on 1800 242 636 (free call) to discuss taking breaks.
Planning to look after yourself
Getting in the habit of making time for yourself as a regular part of your day is important. Don't feel guilty about this time - it's for you. Planning ahead and pacing yourself will also help. If possible plan activities such as housework for times when you're feeling at your best. Don't rush, and remember to value yourself and all that you do.
Practising relaxation - Although it can be easier said than done, you need time to yourself every day. It doesn't need to be long; fifteen minutes can do wonders. Try to take time to just sit and relax or listen to music that suits you.
'I now realize that my moods will vary. There are times when I can cope, feel positive and energetic and others when I'm sad and depressed.'
Taking care of yourself - a checklist
o Do I have someone I trust to talk to about how I'm feeling?
o Am I trying to get some regular exercise?
o Am I trying to get enough rest and sleep?
o Am I trying to eat regular meals?
o Do I get enough breaks from caring?
o Have I got some regular times for relaxation?
'Avoid isolation - foster friendships, by phone if personal contact is unreliable due to the uncertainty of caring role. Keep fit - walk, swim - stress management is important. Have a conference with relatives - agree on division of care, sharing of responsibilities - be specific on commitments. Take a break.'
? What if I'm not coping?
Most carers will tell you that they have times when they feel overwhelmed and unable to cope. If you're feeling this way, talk to someone about it - your family, friends, GP, or contact your Carer Resource Centre on 1800 242 636 (free call).
? Where can I get more information?
It makes a difference for carers to know about:
Ø Where to start when they're a new carer
Ø Financial assistance
Ø Arranging breaks
Ø How to meet other carers
Ø Getting more help at home
Carer Resource Centres are a part of the Carers Association in each State and Territory and provide carers with referral to services and practical written information to support them in their caring role. Contact your Carer Resource Centre on 1800 242 636 (free call). All carers can use the services provided by the Carers Association in each State or Territory.
Acknowledgement: Information Brochure - Queensland Council of Carers Inc.
The Welfare staff are always available to assist in providing support to carers, please contact us if we can assist you further.
QUESTIONS AND ANSWERS
? QUESTION: S.P. is living at home with spouse and teenage children, but the situation becomes quite stressful for all at times. Emotions, moods and expressed feelings of everyone can be unpredictable. S.P. in particular can act in unexpected ways and appears to lack awareness about the feelings of other family members. While at most times we can all cope and live with the changing communication and relationships, there are more times when S.P's behaviour is too difficult to modify. What can we do when tempers flare, verbal language is foul and there is a hint of violence appearing?
ANSWER: Each member of the family needs to have a confidant and friend so that they are able to express their own feelings and get feedback about how best to handle the situation.
Family discussions during a quieter time may be helpful to clarify the acceptable limits of communication and actions by everyone. It may be useful for everyone to agree on certain strategies they take when any situation appears to be escalating.
Help and advice may be available through a local family relationship and counselling service. Or any family member could contact one of the telephone counselling services. A Welfare Officer, General Practitioner or Medical Specialist may have knowledge of local services, so ask them. It may be that there are other specific reasons or causes for the changes within the family household and these need to be identified and dealt with.
It may depend on the perceived severity and frequency of the "incidents" as to whether assistance comes from within the family members, from friends, from general relationship & family services, or from a range of specialists. For the mental and social wellbeing of S.P. spouse and children, bringing the problems into the open is usually a positive step.
QUESTION: S.P. is insistent on "doing his/her own thing" and this results in S.P. not sleeping at the usual hours and avoiding showering or attending to cleaning teeth etc. This makes life very unpleasant at home and must be aggravating S.P's health.
ANSWER: Firstly you may wish to reflect on how this situation arose: was it gradually over a long period or was it suddenly. In the positive self-management of Huntington's S.P would sustain the usual day-night patterns and start each day with a personal hygiene routine. If S.P. never had a routine type life then this means adopting a new pattern of living. And if there are few tangible reasons to get up in the morning and TV during the night is more motivating then it is difficult to switch. S.P may need a mentor to prompt and assist getting "on track" to meet the previous and usual standards and patterns.
But, it could be that there is an underlying cause: depression, cognitive impairment or other symptoms which may be treated. So, make sure that medical-disability advice is sought and assistance from outside of the home provided if appropriate.
Reprinted: "Huntington's News", Issue 80, March 2003 - Huntington's Disease Associations of New Zealand.
The Proverbial Crystal Ball:
GENETIC TESTING FOR HUNTINGTON'S DISEASE
The Genetics of HD
We all have 46 chromosomes in each cell, these are arranged into 23 pairs as we have two copies of each chromosome - one copy from our father and the other copy from our mother.
If we are able to unravel our chromosomes we see that they are actually made up of tightly wound DNA - stretches of which contain code that we refer to as genes. As we have two copies of each of our chromosomes, it follows that we also have two copies of each of our genes.
The HD gene (otherwise known as IT15) is located on the tip of chromosome 4. As we all have two copies of chromosome 4, we all have two copies of the HD gene.
This gene does not cause us any problems unless it is 'disrupted' or 'stretched' in an area known as the CAG repeat region. Only one copy of our HD gene needs to be disrupted to cause us a problem.
As only one copy of the gene needs to be disrupted, we say that HD has an Autosomal Dominant inheritance pattern. This means that each child of an individual that carries the fault has a 50/50 chance of also inheriting the gene fault. Both males and females can pass on the gene fault.
There is also a tendency for the onset of symptoms to get earlier in subsequent generations. This phenomenon is known as anticipation.
o The area of the HD gene where the disruption occurs is known as the CAG repeat region.
o The general population has 27 or less repeats.
o Those with repeat numbers between 27 and 35 are not expected to develop HD, however there is still a risk of the gene expanding in future generations.
o Those with repeat numbers between 36 and 39 repeats may or may not develop the symptoms of HD, however again there is potential for the gene to expand further in future generations.
o When this region has stretched to 40 or more repeats the gene is disrupted and HD is expected to develop at some point in the individual life.
Types of HD testing
The three main types of genetic testing are:
Diagnostic (in an individual who already has clinical symptoms)
Pre-symptomatic or Predictive (in an individual with no symptoms)
Pre-natal (in pregnancy)
These three main types of genetic testing all use the same direct testing technique with the major and most important difference being the circumstances of the individual. These different circumstances raise very different issues in the face of testing.
Prenatal testing includes a number of options - prenatal testing using the direct testing techniques is the most common form of prenatal testing used at the present time, however there are also exclusion testing and preimplantation techniques that may be utilised.
Direct testing involves looking directly at the CAG repeat region in the at-risk individual and counting how many repeats there are. The number of repeats will give an indication of whether or not the individual will develop HD (in a prenatal or predictive test) or has developed HD (in a diagnostic test).
Exclusion Testing is offered to couples where the at-risk parent does not want to know their own status.
This test does not look at the CAG repeat region in the pregnancy, instead it aims to identify whether the pregnancy has inherited chromosome 4 from the affected grandparent (putting the pregnancy at 50% risk) or the unaffected grandparent (putting the pregnancy at 0% risk). Exclusion testing requires the prenatal sample, blood samples from each of the parents, the affected grandparent and his/her partner.
Occasionally the chromosomes being tested are not sufficiently different to be able to tell them apart, therefore this test does not work for everyone. Feasibility studies are usually required prior to testing to clarify this.
Pre-implantation Diagnosis (PGD) is the newest method of pregnancy testing. In this method the egg is fertilised externally using IVF methods and allowed to grow to the 4 or 8 cell stage. At this point one cell is removed and tested using either the direct or exclusion testing methods discussed above. A cell is able to be successfully removed at this stage without causing harm to the embryo.
Due to the fact this is a new technology, PGD providers routinely recommend that it is followed up with standard prenatal testing to double check the resulting pregnancy is not at risk.
PGD is not currently available in New Zealand however is available through some Australian centres on a user-pays basis. As with Exclusion testing, this option does not always work for everyone and feasibility studies are usually undertaken first.
Why Genetic Counselling?
The job of the Genetic Counsellor (Genetic Associate) is not to act as a gatekeeper, or to make life more difficult. Instead the genetic associate is there to ensure the individuals who are undergoing predictive or prenatal testing have all the necessary information available to them so that they can make an informed choice. The genetic associate also hopes to ensure that each individual is undergoing testing at a time that is right for them - not because their parents, friends, partners, or children said they must have the test.
With all forms of predictive testing there are a number of issues to think about. Predictive testing as the name suggests is a way of predicting the future health of an individual. This is usually fine when it is good news, but no-one likes to hear bad news.
It is therefore important to acknowledge and think about the impact the information from predictive testing will have both on the individual undergoing testing and on the individual's family. We like to think that we have thought it all out and that the result won't affect us, but in acknowledging that we are all human it is only natural that it will have some impact. Some of the issues discussed in genetic counselling are:
o Psychological impact of knowing about a life threatening condition
o Psychological impact of escaping a life threatening condition
o Possible insurance discrimination
o Possible employment discrimination
o Impact on family
o Impact on reproductive choices
Should I have the test?
Only the at-risk person considering taking the test can answer this question, no one else.
It is important to remember:
Just because the test exists, doesn't mean we have to use it!
It is natural for well meaning family members to want to arrange for their other at risk relatives to get tested too. However where proceeding with testing may be the right decision for one individual - it may not necessarily be the right decision for their brother/sister/son or daughter.
An individual should pursue testing because they want to, and because the time is right for them - Not because their well meaning relative or friend wants them to, or is pressuring them to.
It is OK to not want to know.
Presenter:
Danielle James, Genetic Associate
Central Regional Genetic Services
Wellington Hospital. Presented at the 2002 HD Conference, Wellington Town Hall - September 22nd, 2002
Reprinted: "Huntington's News", Issue 80, March 2003 - Huntington's Disease Associations of New Zealand.
THE AKT PATHWAY - TRAIL TO A TREATMENT
A new study published in the June 2002 issue of Developmental Cell unveiled a new discovery in the process of cell death in Huntington's Disease (HD), and another potential strategy for the development of a treatment.
Researchers from the Curie Institute in France, as well as the Harvard Medical School and the Gladstone Institute for Neurological Disorders at the University of California, have identified important chemical interactions at the cellular level that are able to inhibit the process of programmed cell death (apoptosis) that is created by mutant huntingtin.
Think Back
Apoptosis is the self-destruct sequence for a cell. Previous articles of Horizon have provided details on the importance of caspase inhibition as a way of slowing down the process of apoptosis in a brain affected by HD. When a cell becomes too old, or is unable to function properly, it initiates apoptosis so that it can be destroyed. Caspases are molecules that play an important part in this self-destruct sequence, but they are not the only player in the process.
This new study demonstrates that it is possible to slow apoptosis by interacting with something called the Akt pathway, another important player in the process of apoptosis. The Akt pathway functions as a transmitter, sending signals that call into action other players in the process of apoptosis, such as caspases. Researchers showed that by introducing a chemical called insulin growth faction 1 (or IGF-1), it is possible to "turn on" the Akt pathway, which then modifies mutant huntingtin and stalls the ability of the cell to self-destruct through apoptosis.
In addition to its ability to block the process of apoptosis, the introduction of IGF-1 also led to a reduction in the formation of protein aggregates (or protein balls) formed by mutant huntingtin in the cell. It is these protein aggregates made up of the mutant or toxic huntingtin that ultimately cause brain cells to trigger the process of apoptosis - the cell's self-destruct system - in the first place.
According to the research team, further study of the nature of the IGF-1/Akt pathway and its ability to stall apoptosis, and consequently protect brain cells, would be valuable - possibly identifying new options for treating HD.
Can you translate that for me?
Apoptosis is a process that cells use to self-destruct if they are damaged or can no longer work properly. In the brain of a person with HD, mutant huntingtin (produced by the mutant gene that causes HD) creates toxic lumps of the mutant huntingtin protein in the brain cells, and causes the cells to start the process of apoptosis - the cell's self-destruct sequence.
In this study, researchers observed that a chemical called insulin growth faction 1 (lGF-1) activates or "turns on" a key player in apoptosis called the Akt protein. The Akt protein works like a transmitter, sending signals to key parts of the cell to inhibit or "stall" apoptosis. When iGF-1 turns on Akt, mutant huntingtin is one of several proteins that is modified or altered by Akt. This alteration of the mutant huntingtin helps to delay the self-destruct sequence (apoptosis) and extend the life of the cell.
The researchers in this study see this result as another possible approach for the development of a treatment for HD.
Acknowledgement: The Huntington Society of Canada - Web Site www.huntingtonsociety.ca
20TH ANNIVERSARY OF DEATH OF MARJORIE GUTHRIE - 13th March 2003
Before he died in 1967, Marjorie Guthrie promised her husband, Woody, she would devote her life to finding answers. And for the rest of her life, from age 50 to 65, she fulfilled that promise, never realizing the effects her life, her work and her impact would have on so many people worldwide.
Marjorie Greenblatt was born on October 6, 1917 in Atlantic City. Her mother, Aliza Waitzman, was a Yiddish poet; her father, a garment merchant. She supplemented her high school education with classes in theatre and dance. Throughout her early years, she never lost sight of her interests in dance and music and she often spent summers teaching dance at camps.
For twenty years, she danced with the New York-based Martha Graham Dance Company. She also taught at the neighborhood Playhouse School of the Theatre, the Jewish Community Centre of Essex County and the New Dance Group. In 1952, she started her own dance school, the Marjorie Mazia School of Dance. Marjorie first met Woody Guthrie in 1942. They were married the following year. Marjorie and Woody had four children, Cathy, Arlo, Joady and Nora. Cathy died at age four in a tragic fire.
When Woody died in 1967, Marjorie initiated, with a small group of six others, what was later to be called the Committee to Combat Huntington's Disease. In the next 16 years, as she traversed the world building an understanding of Huntington's disease, she became educator, advisor, publicist, consultant, role model and friend to thousands who grew to love her. At the time of her death, CCHD's mailing list had grown to 27,000.
Marjorie served on both federal and state government panels, including the National Advisory Council of the National Institute of General Medical Science, New York Governor Hugh Carey's Select Committee on Long Term Care, the State of New York Commission on Health Education and Illness Prevention, the executive committee of the New York State Genetic Diseases Program and the Board of Visitors of Helen Hayes Hospital. She chaired the United States Commission for the Control of Huntington's Disease and its Consequences in 1976-77, out of which grew a federal research grant of over $5 million to establish two "Centres Without Walls".
Marjorie was one of the founders of the National Committee for Research in Neurological and Communicative Disorders (NCR), a coalition of health agencies and leading scientists whose primary purpose is to influence legislators to increase funding for the National Institute of Neurological and Communicative Disorders and Stroke. Her eloquent and always influential testimony supported various health concerns for the NCR. She served on the executive committee and chaired the Public and Governmental Information Committee.
She acted as consultant to numerous nationals and international voluntary health agencies. A grant from the Robert Wood Johnson Foundation sent Marjorie to 12 cities in the United States bringing voluntary health care agencies together to explore common concerns. Many of these groups have formed cooperative networks as a result of these inspirational meetings. Her support and personal guidance was a valuable gift to Huntington's disease organizations in Australia, Belgium, Britain, Canada, France, Italy, Mexico, the Netherlands, New Zealand, South Africa, Spain and West Germany.
Marjorie assisted in the publication of two National Institute of Neurological and Communicative Diseases and Stroke publications, Huntington's Disease - Hope through Research and the Centennial Symposium on Huntington's Chorea: Publication of Proceedings. She wrote a monograph, "A Personal View of Genetic Counseling" and several forewords to books about Huntington's Disease. She provided valuable input in numerous Woody Guthrie publications, including the film, Bound for Glory, and the books, Woody Guthrie Song Book and Woody Guthrie: A Life by Joe Klein.
Marjorie was in the limelight of hundreds of medical conferences, media interviews and seminars. Her most famous lecture, "The Team Approach to Huntington's Disease", was videotaped for educational purposes throughout the United States.
Along her life's path, Marjorie touched many and left a loving following. None will forget her strength and inspiration.
"Love and Peace" became her trademark, as she ended all of her letters and notes to people, from friends and acquaintances to international figures, with this reminder. And so, now, we bid you farewell, Marjorie. Farewell with Love and with Peace.
The IHA community remembers Marjorie, a very special woman, with deep gratitude.
Reprinted: "Contact" Feb/March 2003 - AHDA (Vic.) Inc.
Worth Thinking About
Acting Chirpy makes you happy, say Researchers
Health News 24/02/2003
Taking on activities and acting extroverted can make you happier, psychologists say.
You can make yourself happy simply by behaving in bold or extroverted ways, according to an annual series of studies being carried out by American psychologists.
Regardless of whether you are shy or outgoing, almost any extroverted behaviour has a positive impact on your mood, researchers report in the Journal of Personality and Social Psychology.
"I don't think it's the only way to find happiness, but I do think it's a neglected way," said Associate Professor Will Fleeson, a psychologist at Wake Forest University in North Carolina, USA, who led the study. "People too often look outside themselves for things to make them happy."
The report details three related studies, in each of which about 50 randomly selected university students carried palmtop computers for up to 10 weeks at a time. They used the devices to regularly record their answers to set questions about their mood and their activities.
Subjects invariably felt happier when they were involved in outgoing activities, ranging from simply singing aloud with a song on the radio to walking over and talking to someone attractive.
"Every single participant in the study was happier when he or she acted extroverted than when he or she acted introverted," Fleeson said. "Even introverts can act extroverted and become happier by changing their behaviour."
The studies found that people can make themselves happy either in the company of others or alone, Fleeson told ABC Science Online. "The research demonstrates that extroversion can actually cause happiness."
In social settings, being more talkative or more assertive, voicing an opinion during a discussion or asking a question in class all have positive effects, he said.
In further but as yet unpublished laboratory studies, conducted with graduate student Murray McNeil, Fleeson believes his team has now experimentally confirmed these findings. "I think it's definitely been proved now that being extroverted makes you happy," he said.
"As a society, we tend to think of happiness as something that comes from outside us. It's kind of a radical idea that we have some control of happiness, that personality is a factor in happiness and that, to some extent, we have control over our personalities," Fleeson said.
He now believes that if people want to be happier and choose to act more outgoing, adventurous or assertive, then they have the power to directly improve their own well-being.
Bob Beale - ABC Science Online
(This is the print version of story http://abc.net.au/science/news/health/HealthRepublish 791226.html)
Reprinted: "Contact" Feb/March 2003 - AHDA (Vic.) Inc.
The Aladdin's Bazaar which was to be held in Booval on the 18th May has been cancelled. The Management Committee decided to take this action, after receiving advice from our Solicitor and Insurance Broker regarding Public Liability Insurance cover. While disappointed that the event was cancelled, Hedy and Patrick Keogh, who have organized very successful Bazaars in recent years, are very optimistic that while this door has closed, another will open. They already have their thinking caps on for other ways they can boost our fundraising.
Rotary Trailer and Goodies Raffle - Tickets will be available from the HD Office in May. Please support this combined fundraiser by buying/selling tickets valued at $2.00 each - the Association receives $1.00 for each ticket sold by our Group. We are looking for volunteers to sell tickets at the Caravan Show - ring Barbara at the office if you can assist.
Community Assistance -
We have received, and gratefully acknowledge major financial assistance from the following donors:
JM Bridson
Deadly Australians Pty Ltd
K Horton
JM O'Connell
GR Phillips
At a Corporate Lunch held at The Hotel Broadway, Logan Road, Woolloongabba during March, the Association was the nominated charity to receive the proceeds of fundraising activities. A cheque for $628.00 has been received from The Broadway and we extend our sincere thanks to Kevvie Walters and Management for their generosity.
Bundaberg Family Support Group Meetings. If you are interested in attending please contact Nancy or Jenny for dates and times.
Townsville Family Support Group Meetings are held on the first Thursday of every second month and Care Management Meetings are held on the first Sunday of each month.
The Townsville Mt. Stuart Lions Club assisted the Townsville Family Support Group in purchasing an Intellikeys Keyboard for a client living in the area. Following, is a letter to the Club thanking them for their generosity.
To: Townsville Mt. Stuart Lions Club
My name is Julieanne Lozo, I have Huntington's Disease.
My disease makes it difficult for me to use a normal keyboard. You recently donated some money for an Intellikeys keyboard. It is wonderful. I can now play card games such as hearts and solitaire, play on the internet as well as write letters to my son.
We all appreciate it very much. Thank you.
Yours sincerely,
Julieanne Lozo
May 20 Management Committee Meeting 6 pm at HD Centre, Annerley
June 17 Management Committee Meeting 6 pm at HD Centre, Annerley
July 15 Management Committee Meeting 6 pm at HD Centre, Annerley
AHDA (Qld) proudly supported by Scanlon Printing Company - Phone 07-3865 3700