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April 2001 - Newsletter
In this issue:
President's Message
Welfare Update
Regional Support Groups
Hopkins Scientists Discover how Huntington's Kills Cells: Block Death in Cultures
The Lax-101 Research Project in HD
Joint Inquiry into the Protection of Human Genetic Information
Using Problems as Motivation to Grow
An ABC to Help you Cope with HD
Fundraising
For Your Diary
It seems that the year has only just got under way and here we are producing the second Newsletter for 2001, time really does fly.
This year in September the Australian Huntington's Disease Association - Queensland will be holding a symposium and dinner to celebrate the 25th Anniversary of the Huntington's Disease support group in this State. The Association has come a long way in twenty-five years. From a small group of volunteers distributing a newsletter, we have grown to a well established professional centre with employees and volunteers providing welfare services and various respite activities, plus ongoing education programs and information distribution for families and professionals alike. Formal recognition of the major contributors will be made at the Anniversary Dinner. We have a lot to celebrate!
A number of excellent speakers have been invited for the symposium including keynote speaker Dr. Marcy MacDonald Ph.D. whose Molecular Neurogenetics laboratory played a leading role in the cloning of the Huntington's Disease gene. Dr. MacDonald will be leading informative discussion of the most recent treatment, research and understanding of Huntington's Disease. I trust that as many of you as possible will attend the symposium and dinner.
The Federal Government has recently released the terms of reference for an inquiry into the protection of human genetic information in Australia (reprinted in this Newsletter), a discussion paper is expected to be circulated in late 2001 and the final report is to be completed by July 2002.
Our Association is considering making a submission to this inquiry, so I would welcome contributions from anyone who is aware of the existence of discrimination in relation to genetics/HD on insurance, employment or other issues. Please contact the Association if you feel such a submission is warranted - we would appreciate your comments.
As you read on you will find more reports on some of the latest research findings. Major advances have been made in identifying the finer details of the causes of HD and identifying a potential treatment or cure for the disease. While an actual treatment may still be some time away, I am sure that you will all share our excitement when reading the latest articles.
Gerry Doyle, President
One quarter of the year gone and there appears to be no slowing down, we are as busy as ever. The Association's cars have been on the road constantly and Gwen has been in and out of airports travelling to Mackay, in February and Far North Queensland during March and early April. Since our last Newsletter I have been to Bundaberg and the Wide Bay Region in March, Toowoomba for one day and several trips to the Gold Coast.
In the next couple of months we are hoping to include regional visits to the Gold and Sunshine Coast and hinterlands, Toowoomba and the Central Highlands, and perhaps further west and north depending on demand. If you would like to meet with us while we are in your area please contact the office, as we would love to call on all of the families and professionals known to us in these regions.
In addition a number of clients will be attending the popular respite holiday at the Gold Coast during the first week in May. While the office staff and volunteers will be getting busy with the planning and preparations for the 25th Anniversary celebrations. As always we will be providing support to families and professionals and we are always happy to hear from you if we can assist with issues or just lend an ear!
The new look Annerley Day Respite Service is now in its third month and proving to be very successful. The Day Respite Program has been operating on Tuesdays only with approximately 15 clients attending and 2 Day Respite facilitators coordinating the program. The group appears to be having a great time with a wide variety of constructive and entertaining activities being offered. The Association's staff and committee members extend their sincere thanks to the Day Respite staff and volunteers for their contributions in adapting to the new program and making it such a success. Many thanks also to our clients whose patience and faith has enabled us to make these change. Gwen and I have been scheming up some ideas about how we can continue to maintain increased support for those persons who have recently left the day respite program due to this year's changes. We will keep you posted.
On February 14th the annual meeting of our Professional Committee was held at the HD Centre at Annerley. Fifteen professionals met to discuss agenda items including: accommodation for persons with HD, the 25th Anniversary dinner and conference, Presymptomatic Testing, International Research Updates, Symptomatic and Asymptomatic Research Projects, and Insurance Issues.
We are pleased to report that a final draft of the proposal for an Acute Care HD Accommodation Unit has been signed off at district level. The next step will require application and lobbying of the relevant government departments to raise the necessary funds for development of such a unit. Keep your fingers crossed!
Enthusiastic discussion of current research projects and several overseas findings demonstrated a particular interest in treatments to alleviate HD symptoms and the role of the mouse model in furthering our understanding of HD. Hence our invitation to Dr Marcy MacDonald who has played a major role in the development of the mouse model.
Members of the Professional Committee were also particularly interested in the issues of insurance. I have since attended two very interesting forums about genetics. Dr. Tom Shakespear from the Policy, Ethics and Life Sciences Research Institute, Newcastle, England presented a lecture: "A spiralling problem? Disability and the new genetics" at the University of Queensland. The second event was a debate on "The Human Genome Project: addressing the public health issues", five representatives from a range of professions associated with genetic information presented a variety of thought provoking views on the social and medical implications of genetic information. I expect we will be hearing much more about insurance in relation to all genetic conditions over the next few months.
Kind regards,
Cathy Dart,
Welfare Officer.
Bundaberg Support Group
The Bundaberg Support Group has been extremely busy over the last few months and their hard work has certainly been paying off.
Earlier this year Nancy Swanson accepted a cheque for $3,000.00 from the Sunshine Rotary Group, after many hours of selling raffle tickets for a Car Trailer and Christmas Hamper during the lead up to Christmas. Many thanks to the Rotarians for the support that they have shown our group and Nancy for her tireless efforts in 'sales' and welfare support. The Bundaberg Support Group now has the enviable task of deciding how to spend the money!
Recently the Guardian newspaper dedicated a full page of the mid-week paper to focus on the Huntington's Disease Support Group. We were pleased with the content of the article and a number of local family members were featured in some great photos of the group's activities. The article certainly reinforced the determination of families and volunteers in their mission to raise awareness of HD and improve the quality of lives for anyone affected by the disease.
One of their latest initiatives has been the development of a swimming group. Carinbundy Hostel has kindly made their heated pool available and Nancy has been busy organising transport and volunteers to support a number of people in the pool.
We are always thankful to the Gracie Dixon Respite Centre for their ongoing support. Each Friday some of our clients are invited to participate in an outing with other members of the Respite Centre and we are very grateful to the staff and volunteers of Gracie Dixon for providing this service.
If any of our readers, or friends and family, would like to become involved as a volunteer support person, please contact your local support group or the Brisbane office, we always welcome whatever assistance is offered.
Jenny English
Chairperson
The following media release dated 19 March, 2001, from the Web site of Johns Hopkins Medical Institutions, Office of Communications and Public Affairs, is reprinted for the information of readers.
Hopkins Scientists Discover How Huntington's Kills Cells: Block Death in Cultures
Scientists discovered the gene for Huntington's Disease in 1993, but in all that time, they couldn't explain how the gene leads to the death of a small patch of nerve cells in a key part of the brain.
Now studies from two laboratories at Johns Hopkins suggest precisely what goes awry in the brain cells marked for destruction; a mutant protein "hijacks" a key molecule in a cell's survival system. Using what they've learned, the researchers have also been able to fully reverse impending cell death in laboratory cultures of human cells containing the mutant HD gene.
An account of the study appears this week in the journal Science.
"Obviously, our goal has been to understand HD's mechanism so we can interfere with it early on with drugs," says lead researcher Christopher A. Ross, M.D., Ph.D. "But this is also a broader advance," says neuroscientist Ted M. Dawson, M.D., Ph.D. "It shows us a new way in which genetic errors could cause disease."
Huntington's Disease is a fatal hereditary disorder, marked by death of nerve cells chiefly in the Corpus Striatum, a part of the brain that helps control movements and thought. Patients need inherit only a single mutant gene to get HD. Symptoms typically begin in middle age, usually as uncontrollable movement followed by progressive dementia and death.
"We've long known that the abnormal gene produces a flawed form of a protein called huntingtin," says Ross. Like a train with too many dining cars, the irregular molecule has too many repeats of glutamine, one of its amino acid subunits. Brain cells of patients with HD show characteristic clumping of the flawed huntingtin.
But the clumped molecule itself apparently isn't harmful. "The real problem is that the abnormally shaped protein attracts and becomes entangled with a smaller, critical protein in the cell nucleus," says doctoral student Frederick C. Nucifora, Jr. The smaller protein - a regulatory molecule called CBP - gets "pulled away" from its place of action alongside DNA and then becomes entangled and useless, says Ross.
"Without CBP," he continues, "a pathway crucial for cell survival never gets turned on."
To prove CPB gets hijacked, the researchers attached different colored fluorescent markers to DNA, huntingtin and CBP and watched what happened inside cells to which they'd added mutant HD genes. They could see the CBP get sequestered out of the nucleus. They also showed this "hijacking" in live mice carrying the human HD gene and in postmortem brains from human HD patients.
Assays of gene activity in the nerve cells showed that, under these conditions, CBP's normal gene-regulating activity - turning on genes for survival pathways - wasn't happening.
But most striking, the researches say, was being able to reverse the process in the test tube, turning around the cells' slide into death.
In earlier studies, when researchers in Ross's lab inserted mutant HD genes into nerve cells in culture, the cells died in a way identical to brain cells of HD patients. But this time, when the scientists introduced mutant HD genes into cultured cells, they also added a bogus version of CBP with the molecular areas normally attracted to mutant huntingtin snipped out.
Now, unable to be hijacked, the engineered CBP could perform its survival task. "Instead of degenerating," Ross says, "cells in these cultures remained healthy. We were able to rescue them completely."
"We haven't yet demonstrated the turnaround in a live mouse model," says Ross. That's a critical step, both in proving the principle and taking a future road to human therapy. The researchers anticipate technical details will complicate this work. "Our research so far, however, offers a needed target for developing and testing new drugs."
The results of the study also apply to a growing family of neurological genetic diseases which, the researchers say, operate on a similar principle. They include the spinocerebellar ataxias, a set of rare but debilitating diseases of movement and gait.
The research was funded by grants from the Huntington's Disease Society of America, the Hereditary Disease Foundation and the National Institute of Neurological Disorders and Stroke.
Other researchers on the team are: Masayuki Sasaki, Ph.D., Mathew F. Peters, Ph.D., Hui Huang, Jillian K. Cooper, Ph.D., Juan Troncoso, M.D., and Valina Dawson, Ph.D., from Johns Hopkins. Hitoshi Takahashi, Mitsunori Yamada and Shoji Tsuji from Niigata University in Japan also participated.
Check this Web site to see photographs from the study:
www.hopkinsmedicine.org
Other related Web sites:
hdsa.org
www.hdfoundation.org
The Lax-101 Research Project in Huntington's Disease
Summary of Conference Presentation by David Horrobin, October 2000.
For the past six years Laxdale, a research company based in Stirling in Scotland, has been developing a new approach to the management of nervous system diseases including Huntington's Disease in
collaboration with Professor Krishna Vaddadi of Monash University in Melbourne, Australia. Dr Marina Lynch of Trinity College, Dublin has also been involved in some of the basic scientific studies. LAX-101 is the product of this research programme.
To date three main studies specifically on Huntington's Disease have been carried out. Professor Vaddadi has carried out an animal study on mice carrying the human Huntington's Disease gene and also a human placebo-controlled trial in seventeen patients who were in the mid-stage of the illness. Dr. Basant Puri, of the Hammersmith Hospital in London, has carried out a placebo-controlled trial in seven patients who were hospitalised and requiring 24 hour care.
Professor Vaddadi, working with John Drago, Jerry Clifford and John Waddington, found that when a formulation containing LAX-101 was given to the mice from birth it prevented the development of the movement disorders which in these animals usually appear at 30-40 weeks of age. Both of the clinical studies in Australia and in London showed that in the placebo (dummy treatment) groups a majority of patients deteriorated during the course of the study whereas in the actively treated groups a majority of patients showed improvement. Success was by no means certain since a few patients in the placebo groups stayed unchanged or improved while a few patients in the LAX-101 group deteriorated.
However, these results are encouraging and as a result Laxdale is setting up a major placebo-controlled trial in over 120 patients which should provide a definitive answer as to whether LAX-101 is or is not helpful in Huntington's Disease. Many people are concerned about the ethical issues involved in placebo-controlled trials. However such trials are absolutely required by the European Medicines Evaluation Agency (EMEA) and by the Food and Drug Administration (FDA) in the USA. Without placebo-controlled trials these agencies will simply not allow any medicine to be made available to patients in either Europe or the USA. In order to ensure that a treatment which is effective is made available on the NHS, such trials are therefore an absolute necessity. Laxdale very much understands the concerns of the Huntington's Disease community and is therefore trying to complete the studies as quickly as possible. If the trials are successful then Laxdale will immediately apply to the EMEA and to the FDA for permission to make available LAX-101 to patients.
The trial is being conducted at four sites, the Hammersmith Hospital in London, Johns Hopkins Hospital and Emory University in the USA and the University of British Columbia in Vancouver, Canada. In addition Professor Vaddadi in Melbourne will be continuing with his research programme in collaboration with Laxdale. The multicentre study should start in about mid-November after the ethical committees in the relevant institutions have all given their approval. The trial will mainly involve patients who are living at home but can still travel to hospital for examination. It will last for one year and will involve six visits, first to assess whether someone is suitable for the trial, then for full examinations at the start of treatment, after six months and after 12 months, and for minor investigations at 3 months and 9 months. Because fish oil may interfere with the evaluation of LAX-101, patients who are taking fish oil or who have been taking fish oil in the past three months will not be eligible for the study. There will be no charges to patients for any of the investigations and reasonable travel expenses will be reimbursed. All patients in the study will be offered LAX-101 at the end of the study. If LAX-101 is shown to work, it will be provided free of charge to the participants until such time as it becomes available as a medicine in each country. The Huntington's Disease Associations in the various countries will be working with Laxdale to help recruit appropriate patients for the study.
Laxdale understands the problems and frustrations involved in waiting for an outcome but we will do everything that is humanly possible to get the results quickly. We expect that the last patients will be recruited by mid-2001 and therefore will complete the 12 months by mid-2002. We expect to have the results by the autumn of 2002. If LAX-101 works it should be generally available after approval by the EMEA and FDA some time in the first half of 2003.
Acknowledgement: Reprinted from the Newsletter
of the Huntington's Disease Association
(England & Wales) Issue 58, Winter 2000
Joint Inquiry into the Protection of Human Genetic Information
The following letter (dated 22 February, 2001) and terms of reference were received from the Australian Law Reform Commission, and are reprinted here for the information of our readers.
The federal Attorney-General and the Minister for Health and Aged Care have asked the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) to undertake a joint inquiry into the protection of human genetic information. The terms of reference for the inquiry are attached.
The ALRC and AHEC have been given an important task to look into issues that have arisen due to advances in genetic science. The terms of reference set out a number of factors that the ALRC and AHEC will be taking into consideration throughout the inquiry, with a focus on the ethical implications of the collection and uses of human genetic samples and information in Australia. There is a need to consider developments in other countries, to analyse the Australian situation, and to suggest the best regulatory framework for Australia - one which balances ethical considerations with an acknowledgement of the possible benefits that can be gained from the rapid advances in genetic technology.
There is a need to consider the extent to which privacy of genetic information should be protected, and the circumstances in which discrimination on the basis of genetic information may be inappropriate. While the use of genetic information in the areas of employment, insurance and law enforcement has been highlighted in the past, the ALRC and AHEC will be considering all fields where genetic information may be used now and into the future.
The ALRC and AHED have been asked to make their report to the Attorney-General and Minister for Health and Aged Care by 30 June 2002. In the next 18 months there is a need to consult with all of those with an interest in the inquiry. The inquiry welcomes submissions from organisations and from individuals discussing issues arising from the inquiry. Submissions in response to a discussion paper, which is expected to be released to the public in late 2001, will be particularly welcomed.
An email/fax alert service will also operate for this inquiry to keep interested persons aware of significant developments over the next 18 months. If you would like to be a part of this service, and have not already provided an email contact address or fax number to the ALRC, please contact us to register. Updated information will also be available from the ALRC website at www.alrc.gov.au
Wide-scale consultation will be a major feature of this inquiry. The ALRC and AHEC will hold numerous meetings over the next 18 months to discuss relevant issues with those with a particular interest in the inquiry. Further details regarding meetings will be made available at a later date.
We thank you for your interest and hope that you will be able to contribute to this important inquiry.
COMMONWEALTH OF AUSTRALIA
Australian Law Reform Commission Act 1996
National Health and Medical Research Act 1992
PROTECTION OF HUMAN GENETIC INFORMATION
1. We, DARYL WILLIAMS, Attorney-General of Australia, and MICHAEL WOOLDRIDGE, Minister for Health and Aged Care, having regard to -
- the rapid advances in human genetic technology; and
- the scientific and medical applications of human genetic information which are, or could be, of benefit to the Australian community; and
- ethical concerns in relation to the collection, storage and use of human genetic samples and information; and
- the potential for inappropriate use or application of human genetic samples and information; and
- evidence of, and the potential for, use of human genetic information by a number of sectors including employment; health, including medical research, pharmaceuticals and health administration; insurance and superannuation; and law enforcement; and
- emerging issues about the control of, ownership of, and intellectual property rights in relation to, human genetic samples and information;
refer to the Australian Law Reform Commission and the Australian Health Ethics Committee of the National and Medical Research Council for inquiry and report pursuant to subsection 20 (1) of the Australian Law Reform Commission Act 1996 and paragraph 35 (3) © of the National Health and Medical Research Act 1992 respectively, matters relating to -
(a) whether, and to what extent, a regulatory framework is required
(i) to protect the privacy of human genetic samples and information; and
(ii) to provide protection from inappropriate discriminatory use of human genetic samples and information; and
(iii) to reflect the balance of ethical considerations relevant to the collection and uses of human genetic samples and information in Australia; and
(b) any related matter.
2. In performing their functions in relation to this reference, the Commission and the Australian Health Ethics Committee shall -
(a) conduct this inquiry jointly; and
(b) identify and consult with relevant stakeholders, including the Privacy Commissioner and the Human Rights and Equal Opportunity Commission, and ensure widespread public consultation; and
(c) have regard to the following matters -
(i) the rapid advances in human genetic technology including progress of research towards the mapping of the human genome; and
(ii) the scientific and medical applications of human genetic information which are, or could be, of benefit to the Australian community; and
(iii) evidence of, and the potential for, the inappropriate use or application of human genetic information; and
(iv) the range of Australian ethical opinion as to which, if any, uses and applications of human genetic information are ethically acceptable; and
(v) the global dimensions of issues relating to research, regulation and the protection of interests; and
(vi) any relevant existing or proposed international law and obligations; and
(vii) any relevant constitutional issues; and
(viii) any relevant existing or proposed Commonwealth legislation; and
(ix) the implications of the decision by Australian health ministers to develop a national health information network; and
(x) developments in other jurisdictions, including legislative and other regulatory action; and
(xi) relevant research and discussion of human genetic information privacy and discrimination issues.
3. The Commission and the Australian Health Ethics Committee are to report to the Attorney-General and the Minister for Health and Aged Care by 30 June 2002.
Dated 5 February 2001.
Daryl Williams, ATTORNEY-GENERAL
Michael Wooldridge, MINISTER FOR
HEALTH AND AGED CARE
USING PROBLEMS AS MOTIVATION TO GROW
Do you ever find yourself getting stressed over challenges that come your way? Do you find yourself depressing over your problems? So often, we act as if our life should always be smooth and problem-free. However the reality is very different. The world is not as easy and fair as we would like it to be. All of us face unwanted difficulties, problems or crises at different times. They may be problems at work, our relationships, concerns about the children, accidents, illness - the list could be endless.
Often, we respond as if these problems are really awful and are the "end of the world". It can help us to cope with such problems by realising that although they may be unwanted, dealing with problems is very much a part of living. We are better to have the response of "here comes another one" when faced with a new problem. We also need to keep some perspective - our life is much bigger than just the problem we are stressing about.
Our stress will be reduced if we not only practise accepting our situation but also accept what is out of our control - the past and other people's behaviour. We do not have to like the situation, but we can accept we are dealing with it for now, and accept parts over which we have no control. There are often other things we can do or think that will help us with our concern, but we need to appreciate the difference between that which is in our control and that which is not. For example, we can influence others by giving them information about what we are wanting in a non-critical way, but we have no control over how they respond.
&..we need to appreciate the difference between that which is in our control and that which is not.
Sometimes, good can come from the problems we experience. American Psychiatrist, M. Scott Peck said, "It is in the whole process of meeting and solving problems that life has meaning. Problems aren't the cutting edge that distinguishes between success and failure. Problems call forth our courage and our wisdom. Indeed, they create our courage and wisdom. It is only because of problems that we grow mentally and spiritually. It is through the pain and confronting and resolving problems that we learn".
"It is in the whole process of meeting and solving problems that life has meaning."
It can be hard to see what we are meant to learn from some of our suffering. I think this especially about parents who have lost children. There may not always be a lesson, but we should look for it. Despite adversity, we have a choice about how we respond. We can either choose to be crushed for life or we can choose to use it as motivation to grow.
People often ask me does my job ever make me depressed due to all the suffering I see. Although I do see people's pain, I also see people growing and overcoming. This is what makes my job rewarding.
About the Author - Ken Warren (BA, M Soc Sc, CPC, AAMFC QCA) is a Certified Professional Counsellor in private practice on the Sunshine Coast (Qld). He can be contacted on (07) 5443 7626 or through his email address [email protected]
A thought&..
There are two ways of meeting difficulties:
you alter the difficulties,
or you alter yourself
to meet them.
Phyllis Bottome
An ABC to Help you Cope with HD from "Huntington's and Me - A Guide for Young People" by Alison Gray.
We've talked about some of the situations and feelings young people in families with HD have to cope with. Now we talk about some ways to take care of yourself, to help you cope with your own feelings, with your parents or other people in your family who have HD, with your friends and the rest of the outside world.
Learning to cope is a bit like being a fish swimming up a river full of rapids and boulders, floating logs and other obstacles. To get to a calm place takes strength, determination, courage, hope and optimism. And a fair bit of skill. You need to be able to recognise the obstacles and find a way through them, round them or over them. If you're going to make it, you'll have to be fit, so the first person to look after is yourself.
Looking after yourself
Here's an ABC of how to look after yourself. If you think about it, you'll notice that some of the suggestions are about looking after your body, some are to feed your mind and some are to nurture your spirit. You need to look after all three parts of you. Keeping fit and being physically active will help your mind and spirit as well as your body. It's a good idea to look after them directly if you can. Add your own strategies to the list - the more strategies you have the better.
Affirm yourself - It doesn't matter whether you're in a mess sometimes, or feel angry, quarrelsome, unhappy and confused, you're still you, the same lovable person you've always been.
Be yourself - Acknowledge your feelings and thoughts. Allow yourself to feel happy when you're happy and sad when you're sad. It's okay. You don't have to feel guilty or self-conscious or pretend to be someone you're not.
Cry when you need to - Cry yourself a river if you need to. Crying is a great way to release your feelings and ease the pressure. Crying reaches beyond words right into your soul. Let the tears fall and keep going till the crying ends. Because it will end.
Dream - Dream about the past, the present and the future. Remember how life used to be, identify all the good things in your life right now and think of all the wonderful opportunities that lie ahead. Because you do have a future.
Express your feelings - Almost every thought, feeling and behaviour is normal, as long as it is not illegal or destructive. You might feel like crying or laughing, talking, drawing, singing or dancing. You might feel like hitting a ball against a wall or yelling into the wind. That's okay. Don't bottle up your feelings out of embarrassment, fear of rejection or fear of hurting someone else. If other people can't cope, that's their problem, not yours. Put on your own lifebelt first.
Find a friend - Friends are the best people to have. You can hang out together, mooch about, play sport, skateboard, go for walks, eat. You don't have to explain your situation but if you want to talk you can. Friends are worth their weight in gold.
Get fit - Or stay fit. Dealing with stress is hard work and you need to be fit to cope so remember to look after your body as well as your spirit. Even when you're feeling tired, take time for a walk in the fresh air, or a run, a swim, a cycle, a quick blast on the skateboard - whatever turns you on. Hard as it may seem if your tastes run to chippies and soft drinks, it really does help to eat healthy food, drink plenty of water and get a good night's sleep. Do your best!
Help - Ask for help when you need it and help others when you can. It feels good to both get and give help. When you ask for help, someone else has the chance to feel better as well as you.
Information - Find out as much as you can about Huntington's Disease. Remember knowledge is power. Your local HD Association will be able to give you information. There are addresses at the back of the book. You can also look for information in the library or on the internet.
Join a support group - Many places have support groups for young people. In New Zealand we have an annual camp where young people can come and learn more about the disease, share their feelings, get and give support and have a lot of fun at the same time. Other places may have something similar - ask your school counsellor if she or he knows of a group or contact your local HD Association.
Keep a diary - Writing down your feelings can be both liberating and illuminating. The great thing about a diary is that it is private. You can say what you like, however you like, which makes it a safe place to keep painful, sad, and angry thoughts as well as happy or hopeful ones. If writing's not your thing, turn your diary into a scrapbook or a home for your cartoons. No matter how skimpy or erratically the entries in your diary are, they will still be a treasure in the future.
Laugh - Funny things still happen in your life. Enjoy them. Celebrate the good times. Laugh at absurdities and jokes, share good times with your friends. Yes, yes, the old saying is true - laughter is the best medicine.
Make music - Music is also a great comfort and companion. Play your favourite music, sing at the top of your voice or, better still, make music with your friends.
Note your past successes - Remember all the things you've achieved recently. You might have passed a course, won a competition, done well in sport, finished a good book, coped with a difficult situation without 'losing' it. You have many skills and talents. Don't ever forget that.
Optimism - Much is happening in the world of HD research and you have plenty of time to develop a rich, fulfilling life. Look around you, think of your talents and of all the good things in your life. You'll soon see there is a lot to look forward to.
Positive thoughts are great - Remind yourself of all the things you do well. Like listening, cooking, making music, playing sport, being a friend. Remember, you've survived so far and you will continue to survive. You have much to offer yourself and the world.
Question - Continue to be curious. The questions you want to ask about HD will change over time as you grow older and move into different stages of your life. You'll need new or different information to help you plan your future and cope with changing circumstances. Keep asking.
Relax your body and mind - Relax, take a deep breath, be calm. Take time to soothe your body and soul and reflect on the beauty of the universe and your place in it. You can do this when you watch the sunset or the sunrise, take a long bath, walk the dog, stroll on the beach or in the bush, fly a kite or fish.
Share your problems A problem shared is a problem halved, or so the saying goes. Talk to your mother or father - tell them how you're feeling and ask if they have time to talk. They are going through much the same thing as you and probably feel much the same way. If you have other adults who understand, talk to them. There might be a counsellor at school or a social worker you can ring. Pets make good listeners too - they don't get bored or tell you to pull yourself together. Soft toys were invented for just this purpose - teddy bears make excellent companions.
Treat yourself - Pamper yourself. Having plenty of rest, eating good food and keeping fit will care for your mind and body but your spirit deserves some pampering as well. Indulge in some junk food occasionally, blob out in front of TV - for a change! Have a hot bath, get a massage, go shopping, buy a magazine, surf the net, whatever makes you feel good.
Universe - Remember that you're part of a much bigger system. You belong to a family, a school or workplace, a community, a country, a world, the universe. You're part of the natural rhythm of change. Seasons come and go, people are born, grow older and die. Some creatures live for only a few weeks, others live for hundreds of years. Earthquakes, floods, avalanches and droughts are part of the natural order. On a big scale, such changes are normal, on a personal level they can be devastating - but they are still part of the natural order.
Value yourself - Coping with HD is hard but it is also rewarding. As you cope, you grow in wisdom, acceptance, compassion and maturity. You have the chance to think about what is really important in life. You can be a model for others, so value that.
Write - Write, draw, sing, dance, play music, play. Be part of life.
X - What can we say? This is the mystery spot for you to fill in with your private coping strategies.
You - Yes, we've said it before but we can't say it too often. You're lovable, valuable, precious to yourself and others. Don't forget it.
Zzzs - At the end of all this, you'll be tired. Treat yourself, put your feet up, sleep in, catch up on those zzzzs.
Acknowledgement - Article reprinted with permission from Huntington's Disease Association (Wellington) Inc. from "Huntington's and Me - A Guide for Young People" by Alison Gray. This book is available at a cost of NZ$12.00 (including GST) plus package and postage and can be ordered from:
Graeme and Elaine Bradley
RD1, Bulls, New Zealand.
Fax/Tel: +64-6-327 6703.
Aladdin's Bazaar - Sunday 8th April - Hedy and Patrick Keogh once again worked tirelessly to stage the Aladdin's Bazaar which was held in conjunction with the Ipswich Festival. Approximately $1,000.00 was raised for the Association. We extend our sincere appreciation to all those who were involved in providing a great day of entertainment, however we would particularly like to thank Hedy and Patrick for their enthusiasm and commitment, and the Bellevue Restaurant in Limestone Street, Ipswich for providing the venue.
The Sherwood Forest Runners recently donated $450.00 to the Association to be used to purchase a Pressure Relieving Mattress Overlay. This Mattress Overlay will be loaned to a HD patient through the Association's Equipment Lending Scheme.
Money allocated by the group, was raised through donations made by the runners. We extend our sincere appreciation to the runners for their generosity.
Future Fundraising Activities -
Cookie Drive - Order forms will be distributed with the next Newsletter and cookies will be available for collection on the 21st August.
Charity Golf Day at Redbank Plains - 26th August - If you are able to form a team of 4 players, or just come along by yourself, please contact Barbara at the office for further details.
Corks - Since the beginning of this financial year approximately 500 kilograms of corks have been collected and forwarded to the HD Centre as part of our fundraising program. Bearing in mind the weight of one cork, it is near impossible to estimate how many bottles of wine this would amount to! Many of our volunteer collectors comment that "they didn't drink it all". One collector however, did admit to "really enjoying" her contribution to our fundraising.
Many people collect corks on behalf of the Association, however the bulk of the corks come from Sheila and Norm of Brisbane Bottle Exchange. We extend our sincere thanks to them for their efforts and appreciate their friendliness and cooperation in our dealings with them.
Eunice and Mary are our volunteer "cork sorters". Is it their cheery disposition, or is it the fumes? Much fun and laughter is heard throughout the office as they wade their way through bags and bags of corks.
If you are interested in assisting with this fundraising activity, and live in the south-east corner, please contact the HD Office so that we can arrange pick-up of the corks.
The printing of the Newsletter was
done by courtesy of
SOUTHPORT PRINTING COMPANY
19 Production Avenue
Ernest, Q. 4214
Tel.: (07)5594 9911
May 15 Management Committee Meetings - 7.30 pm at HD Centre
June 7 Townsville Family Support Meeting - 7.30 pm at 59 Cambridge St., Vincent
June 12 Bundaberg Family Support Meeting - 7.00 pm at Railway Hotel, Bundaberg
June 19 Management Committee Meeting - 7.30 pm at HD Centre
July 17 Management Committee Meeting - 7.30 pm at HD Centre
August 2 Townsville Family Support Meeting - 7.30 pm at 59 Cambridge St., Vincent
August 14 Bundaberg Family Support Meeting - 7.00 pm at Railway Hotel, Bundaberg
August 21 Management Committee Meeting - 7.30 pm at HD Centre
August 26 Charity Golf Day - Redbank Plains