Newsletter Dec 2003

In This Issue

• President's Message
• National Meeting & Seminar
• World Congress
• Secrets of the Brain Revealed
• Genetic Matters
• Why All the Fuss about Antibiotic Overuse?
• Attitude is Everything
• Fundraising
• Donate Online

President's Message

Dear Friends,

Its Christmas once again - where has the year gone? However it has been a busy year for our Association with many changes and I guess we will see many more during 2004.

Nationally we have seen a new National Chairperson elected: Ann Jones from Western Australia has accepted the role and Del Weston and Robyn Kapp are taking on the roles of Secretary and Treasurer respectively.

Gwen Pratten attended from Queensland and her report indicates very positive activity from our National body in the future.

Our Queensland Management Committee has also been affected by changes and it is with much regret that our President, Gerry Doyle, found that his heavy work load and personal commitments prevented him from continuing as our leader for another year. I know you will all join with me in thanking Gerry for his time and invaluable help over the past six years.

Mary Steptoe resigned from her position on the Management Committee and we sincerely thank Mary for her years of service to our Association as a valuable Committee member and we wish her all the best. We will certainly miss her input.

We extend a warm welcome to Allan Fox and Peter Byrne as members of the Management Committee and look forward to their positive contribution. There is much to achieve and we need the invaluable experience of all members, both new and old.

The Annual General Meeting was held in September and unfortunately not well attended. Those who attended were rewarded with an excellent presentation by Judith Murray and it was disappointing that more members did not benefit from her wisdom.

The Management Committee and staff are constantly reviewing the service we offer to clients. In an attempt to improve the level of support to those attending the Annerley Day Respite Program, some changes will be introduced early in 2004. Also it would be remiss of me if I didn't extend our thanks to the staff and small contingent of volunteers who make our Day Respite Program so successful.

I would like to thank Cliff Farmer for the tremendous amount of work that he has been doing on the Residential Accommodation study - a lot of work that sometimes goes unnoticed due to the slow progress that is being made. However Cliff is not about to give up as the success of this issue is vital if we are to provide total care to all Huntington's Disease clients.

Thanks again to Barbara and Helen for keeping the administration system ticking over in fine style. They work under constant pressure but still have the time to assist with the Day Respite Program.

Thank you Gwen and Jan for providing coordinated care for all Huntington's Disease families throughout Queensland; the hours never seem to be enough to get it all done but their achievements with our people are beyond expectations.

Unfortunately the success for much of our results relies heavily on the help from our volunteers and the income from our many fundraising activities. We are also indebted to the many generous people who selflessly donate to our Association. We could not possibly operate without your financial assistance and we welcome your donations. Please don't stop.

Once again sincere thanks to all who make our Association the success it is. Because of you all we can look forward to 2004 with great expectation.

I trust that you will all have a very happy Christmas and a wonderful and successful New Year.

Ray Bellert, President

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The National Meeting was held in Burnie, Tasmania on the 5th November followed by the Seminar on the 6th and 7th November.

I would like to thank the Management Committee for the opportunity to attend the National Meeting and Seminar, and to celebrate the 25th Anniversary of the Tasmanian Association.

National Meeting - Ann Jones of Western Australia (Tracey Hender's mother) was elected Chairperson to the National Body for the next two years. Del Weston of Western Australia was elected Secretary, and Robyn Kapp of NSW was elected Treasurer. This is the first time the National Body has elected 3 office bearers.

Issues arising from the meeting include:

· Discussions relating to Telemarketing.
· Hippeastrum bulbs, boxed with soil and pot as a fundraising exercise.
· HD Awareness Week/Day - 3rd Friday in May was a suggested date. Each State to address awareness as they feel inclined.
· Concerns regarding the possibility of Patenting HD research findings. Two delegates are informed regarding these issues and are preparing a submission for the Australian Law Reform Commission.
· Development of a National Catalogue detailing available resource material.
· Accommodation issues - each State indicated their position as present. All delegates expressed concerns regarding the care of younger persons with HD.
· Robyn Kapp reported on the Mini Conference which replaced the IHA Congress planned for Toronto which was cancelled due to the power failure in that part of the world.

This was one of the most productive National Meetings I have attended, and a Teleconference is planned early in 2004.

National Seminar - An article to be included in this Newsletter clearly outlines the exact presentation Professor Richard Faulls delivered as the Keynote Speaker at the Seminar. This was an excellent presentation.

Other speakers included:

· Dr. Sandy Taylor - Decision making relative to Predictive Testing.

Other topics included:

· Laughter Therapy
· Genetic Discrimination
· Housing and Support Services
· Physiotherapy
· Living positively with a positive result for HD
· Feeding techniques, and
· Late stage HD Nursing Care

The Tasmanian Association is to be congratulated on hosting these successful events. The 25th Anniversary Dinner was well attended with all States represented and good support from Tasmanian families. The Mayor of Burnie was present and expressed support and appreciation of the work of the Tasmanian HD Association. The 25 candles were lit to acknowledge the occasion and an enjoyable evening was experienced by all who attended.

Gwen Pratten, Qld. HD Representative

WORLD CONGRESS ON HUNTINGTON'S DISEASE
WITH A DIFFERENCE!!

As some of you may have heard, the World Congress on Huntington's Disease which was scheduled to be held in Toronto, Canada, from 16th - 19th August 2003, did not quite go ahead as planned. Unfortunately the massive power blackout that occurred in Toronto and other parts of Ontario (Canada) and north-eastern USA on 14th August resulted in the Congress being cancelled by the Marriott Hotel where the Congress was to be held. The hotel did not have full power or running water at the time the decision was made. But what do you do with 100 people who have arrived ready for a conference? You organize another one, of course!

Saturday 16th August was an extraordinary day for the conference organizers and members of the Board of the International Huntington Association. After trying to calm and reassure those who had managed to get to Toronto (mainly from Europe, UK, Asia, Australia and New Zealand), negotiations were held with the management of the International Conference Centre of Ryerson University, which was providing accommodation for many conference delegates. As the power situation had somewhat stabilized by then, it was agreed that the centre would provide a meeting room and meals for a 2 day conference to be held on Sunday 17th and Monday 18th August, with the IHA continuing to meet on Wednesday 20th. They even agreed to provide a conference dinner for the Monday night!

Obviously a new program had to be devised for the conference, and I'm sure you would have been impressed and proud to see the major role our Executive Officer, Robyn Kapp, played in this. Robyn found out who had arrived, who had brought a poster or an oral presentation, drafted a program which was revised and revised, again and again, as more people arrived and were willing to be included. Many of those who had brought a poster gave a brief talk about the poster, and we were able to put our posters on the walls of the meeting room. No one was deterred by the fact that the posters kept falling down while people were talking - we just stuck them back up and continued on! A data projector was obtained for the second day so things were almost normal! There was a relaxed, informal and collaborative atmosphere at the conference that reminded me of the International HD conferences I had attended years ago.

It was unfortunate that we did not get to hear about all the research that is happening in the USA and Canada, as these presenters had been told the Congress was cancelled and therefore did not arrive. It was even worse for those who were in transit and could not fly into Toronto and/or heard the Congress was cancelled so had to turn around and go home. Although I had to land in Windsor (about 400 km west of Toronto) at least I did make it to Toronto, after a night in a blacked out hotel and a 4 hour bus ride! For those of us who attended the 'revised' Congress it was a memorable and worthwhile experience, and it also provided an opportunity for some of the younger researchers from countries like New Zealand to present their research by oral presentation rather than only by poster.

I would like to thank all those who contributed to making the revised conference a success despite the setbacks, in particular Isla Horvath and Elaine Taylor of the Huntington Society of Canada, Christiane Lohkamp, Gerrit Dommerholt and Robyn Kapp of the IHA board, and the staff of the Ryerson Conference Centre in Toronto.

Fiona Richards, Social Worker
Department of Clinical Genetics
The Children's Hospital at Westmead
Reprinted: "Gateway", AHDA (NSW) Inc.
September/October 2003.

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NZ Herald 11.07.2003
By Simon Collins, Science Reporter

Maurice Curtis examines a model of a brain.
Picture / Derek Flynn

New Zealand scientists have helped topple a long-held belief that our brains start to decline from the teenage years.

A team at Auckland University's medical school, led by Professor Richard Faull, has found that our bodies actually create new brain cells when they are hit with brain disorders such as Huntington's disease.

The discovery offers hope for eventual treatment of previously incurable brain diseases such as Huntington's, Parkinson's, Alzheimer's and epilepsy.

"Up till now the only thing we have been able to tell patients with any certainty, once we have made a diagnosis (of brain disease), is that they are going to get worse," Professor Faull said.

"To be able to turn that around and say we've just found something which shows that the diseased brain does make new brain cells, and if we can make that go faster, suddenly you are holding a glimmer of hope."

The discovery is only a first step, and Professor Faull said scientists faced "a pretty fundamental challenge" to work out how to help brain cells multiple more quickly.

But the discovery itself had "turned around science by showing the brain can repair itself."

"When I went to medical school I was told that by the age of 15, whatever size of brain you had, that was it for life, and you had to look after your brain because you were gradually going to lose a few more brain cells each year."

That belief was first challenged five years ago when United States researchers gave cancer patients a "marker" that showed up on every new cell in their brains. They were testing a drug and wanted to see whether it stopped tumours growing.

The drug did not work and the patients died. But when researchers opened the dead patients' brains, they found the "new-cell" marker not only in the tumours but also in other cells in a part of the brain called the hippocampus.

Professor Faull's team used a unique "bank" of brains donated by the families of brain disease victims to find that new cells are also generated in a region of the brain called the basal ganglia, which co-ordinates movement.

Doctoral student Maurice Curtis and other researchers used three stains as markers to test whether the new cells were true brain cells, or neurons, rather than glia, the connective cells which were thought to just help clean up the brain.

They found that the brains of patients with Huntington's Disease - a genetic disorder which makes victims twitch - were generating both glia and neurons.

"The exciting thing is that the human brain is creating increased numbers of new brain cells," Professor Faull said. "The problem, of course, is that for the Huntington's Patients, it's too little, too late. So we have to try and see how we can enhance this process."

The discovery does not mean that eventually we may live forever.

"We don't deny there is an ageing process," Professor Faull said. "but it's not inevitable that you are going to become dumber and dumber."

"Everyone thought senile dementia was an inevitable process of ageing, that if you lived long enough you would lose your marbles.

"But Alzheimer's disease is a form of dementia that we now know is caused by a disease. Once you say it's a disease, it's not an inevitable process of growing old.

"If it's caused by a disease, therefore there must be a cause, and therefore there must be a cure."

Studies showed that putting animals in more challenging environments boosted the number of new brain cells they generated.

"Rats that have running wheels or bits of paper to tear up make more brain cells," Professor Faull said.

"So 'use it or lose it' is an important message. The more supportive the environment, the more active you keep your brain, the longer you are going to keep your brain."

He said the discovery was only possible because families of brain disease patients provided the brains of loved ones within hours of death.

Reprinted with permission from the NZ Herald)
Source: HD Associations of New Zealand, Issue 82, September 2003.

GENETIC MATTERS
With Kim Summers PhD
Preimplantation Genetic Diagnosis

Some couples know they are at risk of having a child with a severe genetic condition, because the condition runs in the family, because the mother is in the older age group or for other reasons. Until recently, their only option was to conceive a child and then have the child's cells tested for the condition when the pregnancy had reached 11 weeks (cells obtained by chorionic villus sampling) or 16 weeks (cells obtain by amniocentesis). These procedures put the pregnancy at a slight risk of miscarriage. For many couples, testing in this way is stressful and decisions must be made too late in the pregnancy for comfort. Now, with in vitro fertilization (IVF) there is another possibility.

When a sperm fertilizes an oocyte, a single cell results. Within a few days this cell has divided several times to result in eight identical cells. If one or two cells are removed from the embryo at this stage, the remaining cells will go on to develop into a healthy baby. This has led to the development of a new form of genetic testing for couples at risk of having a child affected with a severe condition, called preimplantation genetic diagnosis (PGD).

Couples who want to take advantage of this procedure are required to go through all the steps for IVF. Eggs (oocytes) are harvested from the mother and sperm from the father. The eggs are fertilized in the laboratory and the embryos are allowed to develop to the eight cell stage. One or two cells are removed from each healthy embryo and tested the same day for the genetic condition. Only embryos which are free of the condition are implanted in the mother's uterus, so that the couple can be sure that their baby will not have the condition.

This process has a number of disadvantages. It is used primarily where there is a DNA based test for the genetic condition, so the family must know what DNA change is associated with the condition in their case, before the couple enrolls for IVF. The couple must go through the IVF procedure, with the associated emotional, physical and financial stresses. The likelihood of a healthy pregnancy is enhanced by the fact that the couple are not infertile, but reduced by the fact that many embryos will not be suitable for implantation (25% on average for a recessive genetic condition, 50% for a dominant condition). There are issues about what should be done with the unsuitable embryos. Couples must balance these disadvantages against the need for testing an existing pregnancy and possibly terminating it if the more conventional process is used.

It is also possible to test embryos at the eight cell stage for some other characteristics. For example, the chromosome complement of the embryo can be examined. This is being used by some IVF clinics to check the embryos of older mothers who are at risk of chromosome abnormalities. Analysing the chromosomes also shows the sex of the embryo. In cases where a genetic condition is sex linked, the process can be used to choose female embryos, so that there is no risk of a condition which occurs in males of the family. Following from that, it is also possible to select among embryos to implant only those of the sex desired by the parents, even where there is no genetic condition, for example to "balance the family". This is banned in some countries but available in others. PGD has also already been used in some countries to create "saviour siblings" who will be able to donate bone marrow or cord blood cells to a sibling with a terminal condition.

As we know more about the function of different genes, we will begin to understand the genetic influence on many human characteristics, some good (like musical, intellectual or sporting ability) and some bad (like criminal behaviour and tendency to psychiatric illness). The idea of the "designer baby" has arisen from the possibility that embryos could be screened to implant only those with combinations of genetic variants chosen by the parents to ensure the child is close to their ideal. The movie GATTACA exploits this idea and shows a society which has taken genetic discrimination to extremes. At present this is still far from possible.

We don't know enough about the different genes and their functions, and we don't understand all the interactions with the environment (including other people) which determine the final characteristics of any human being. Even if we could choose embryos with specific genetic variants for the appropriate genes there would be no guarantee that the child would have the planned characteristics if the environment wasn't right.

PGD offers an alternative to couples in a difficult situation. It is a technology which can be exploited for purposes other than avoiding severe genetic conditions. Each individual and society must make the decision about where to draw the line in the use of this new technology.

Acknowledgement: Self Help Queensland, September Newsletter, Issue 3, 2003.

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WHY ALL THE FUSS ABOUT ANTIBIOTIC OVERUSE?

What are antibiotics?
Antibiotics are medicines that treat infections caused by bacteria. They can be lifesaving medicines for people suffering from severe bacterial infections. However, their effectiveness is being reduced by inappropriate use, so people are now dying from infections that were previously treatable. Unless we use antibiotics properly, the problem will only get worse, and more people will die unnecessarily.

What's the difference between bacteria and viruses?
Bacteria and viruses are tiny micro-organisms (germs) that live throughout our environment. Bacteria live outside cells. Viruses invade cells and live within them, and are much smaller than bacteria. Some infections are caused by bacteria; others by viruses.

Why shouldn't we use antibiotics for viral infections?
Useless - Antibiotics treat only infections caused by bacteria. They have no effect on viruses. Therefore, they cannot treat viral infections, such as the common cold and the flu (influenza).

Antibiotic resistance - When a person has a bacterial infection, they have millions and millions of the bacteria in their body. The individual bacterium vary in their susceptibility to antibiotics: most are susceptible, a few are resistant. When treated with an antibiotic for the first time, most of the bacteria are killed off. However, some of the resistant ones may survive. With each successive exposure to the antibiotic, the more susceptible bacteria are killed off first, leaving the resistant ones. Over time, the proportion of resistant bacteria may increase, until almost all the bacteria are resistant to the antibiotic. When this happens, the bacteria are said to be 'antibiotic resistant'.

Using a course of antibiotics for a viral infection gives bacteria in the environment another exposure to the antibiotic. As a result, we may make it a tiny bit harder to treat the next infection caused by bacteria, while not achieving any benefits.

Before antibiotics were discovered in the 1930s, more than half of all deaths were caused by bacterial infections. By the late 1960s, antibiotics had been so successful in treating bacterial infections that the US Surgeon-General told the US Senate it was time to 'close the books on infectious diseases'. Today, some strains of bacteria that cause infections have become resistant to many antibiotics, so people are again dying of infections caused by them. In Australia, antibiotic-resistant bacteria are thought to cause more than 7000 deaths each year.

Antibiotics treat only infections caused by bacteria. They have no effect on viral infections, such as the common cold and flu.

Side effects - Antibiotics can cause unpleasant side effects, such as stomach upsets, diarrhoea and thrush. The suffering is usually justified because the benefits outweigh the side effects. However, if the treatment is inappropriate in the first place, the suffering is completely unjustified.

Waste of money - Unnecessary use of antibiotics is a waste of money. The National Prescribing Service estimates that more than 3 million antibiotic prescriptions are wasted on viral infections each year. This wastage costs the community millions of dollars - money that could be better spent elsewhere.

What should we do?
Don't use antibiotics unnecessarily. When consulting a doctor about a cold or the flu, don't ask for an antibiotic. Save antibiotics for the times when you really need them. That way bacteria won't become resistant to antibiotics unnecessarily, and we will continue to have effective treatments for them.

CAN I GET IT AT THE PHARMACY?

Medicines can have detrimental effects as well as beneficial ones, so rules and regulations have been developed to ensure their safety and effectiveness. Some of these rules and regulations affect where and how you can buy medicines. As a result, some medicines can be bought from supermarkets and other retail outlets, and others can be bought only from pharmacies. Still others can be bought from pharmacies only if you have a prescription from a doctor or dentist.

Availability
The rules and regulations determining where and how you can buy a particular medicine depend on a number of factors, including -

· safety and toxicity of the active ingredient
· condition used for
· effects when used correctly
· side effects
· likelihood of accidental or deliberate misuse
· effects if taken accidentally by children
· effects of taking an overdose
· potential for people to become dependent on it
· desirability of making it easily available.

In general, the safer the medicine and the more minor the condition being treated, the fewer the restrictions on the medicine's availability.

The table below shows the main categories of medicines, their availability, and the type of conditions they are intended to treat.

In some cases, the amount of medicine in a packet may affect where and how it can be sold. As a result, small packets of some medicines are available in supermarkets and other retail outlets, but packets containing more tablets are available only in pharmacies. For example, packets of 25 or fewer tablets of paracetamol (500 mg) can be sold in supermarkets. However, packets of more than 25 tablets can be sold only in pharmacies.

Over-the-counter medicines

In general, over-the-counter medicines are intended for conditions that people can recognize themselves, and which are common, minor, self-limiting, and not life threatening.

Some over-the-counter medicines have specific rules and regulations governing their availability. 'Pharmacist Only Medicines' are stored behind the pharmacist's counter. You can buy them only after seeking advice from a pharmacist to ensure that they are appropriate and safe for you. 'Pharmacy Only Medicines' are stored on the open shelves in pharmacies. You do not have to seek advice from a pharmacist before buying them, but if you want advice you can ask for it.

Acknowledgement: "Medicines Talk" Information for Consumers and Consumer Organisations, No. 7, August 2003.

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ATTITUDE IS EVERYTHING

Have you ever known someone who was consistently positive no matter what their circumstances? I was recently told a story of a man called Michael who was always in a good mood and always had something positive to say. When someone would ask Michael how he was, he would reply, "If I were any better, I would be twins!"

He was once asked how he managed to stay positive all of the time. He replied, "Each morning I wake up and say to myself, Mike you have two choices today. You can choose to be in a good mood or you can choose to be in a bad mood. I choose to be in a good mood. Each time something bad happens, I can choose to be a victim or I can choose to learn form it. I choose to learn from it. Every time someone comes to me complaining, I can be weighed down by their complaining or I can stay focused on the positive side of life. I choose the positive side of life.

"We all choose how we react to situations. We also choose how we allow others to affect our mood. We are not always aware of these choices, but they are choices nonetheless. The bottom line is it's our choice in how we live life", he said.

A few years ago, Michael was involved in a serious accident, falling 20 metres from a communications tower. After weeks in intensive care, Michael was released from hospital with rods placed in his back. When asked how he was, he replied, "If I was any better, I'd be twins. Want to see my scars?" When asked what had gone through his mind during the accident, he said, "The first thing that went through my mind was the well-being of my daughter. Then as I lay on the ground, I remembered I had two choices. I could choose to live or I could choose to die. I chose to live.

The paramedics were great. They kept telling me I was going to be fine, but when I saw the expression on the faces of the doctors and nurses, I got really scared. In their eyes, I could read 'he's a dead man'. I knew I needed to take action. There was a big nurse shouting questions at me who asked if I was allergic to anything. 'Yes', I replied. The doctors and nurses stopped working as they waited for my reply. I took a deep breath and yelled, 'Gravity!'

Over their laughter, I told them, 'I am choosing to live. Operate on me as if I am going to live, not going to die'." Michael lived, not just due to the skill of his doctors, but also because of his amazing attitude. From Michael, we can learn that every day we have the choice to live life fully. Attitude, after all, is everything.

About the Author - Ken Warren (BA M Soc Sc, CPS, 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]. Au

FUNDRAISING

It has been a busy period with fundraising and we are happy to advise readers that our efforts have been well rewarded.

Charity Golf Day - Raised in excess of $1300.00 - a great effort by Don Gray and other volunteers who assisted on the day.
Melbourne Cup Calcutta - Despite the fact that we contemplated cancelling this fundraiser due to lack of support, approximately $1000.00 was raised. Thanks to Allan Fox for his contribution, and to all those who attended, you really dug deep and we were rewarded with a successful evening financially, and a fun night.
Sausage Sizzle at Bunnings - This was a first for the Management Committee and one we hope to repeat next year. Approximately $700.00 was raised. Thanks to our volunteers, in particular our friends from the Sherwood Forest Runners and to Bunnings at Mount Gravatt for giving us the opportunity to set up our stall.
The Cookie Drive and Christmas Hamper Raffle are still under way.

Many thanks to readers for supporting fundraising activities during 2003.
The Ipswich State Emergency Cadet Unit is conducting a fundraising event for the Association. To show our appreciation and give them support we ask readers in the area to call in and enjoy the activities offered.
Venue: 54 Thorn Street, Ipswich
Date: 14th December, 2003
Time: 10 am to 2 pm

Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors:
Action Formwork Pty. Ltd.
P. Barnes
J.R. Bolton
J.T. Bowen
M.G. & R.J. Bowhay
C. & P. Constructions Pty. Ltd.
B. Gillespie
W.G. Hancock
J. & L. Hartkopf
H.S. Heath
J. Hildreth
B. Litow
K. Neal
L. Promnitz
J. & R. Punch
A. Rosenfeld
Rud Chains Pty. Ltd.
L. Saffy
G.M. Spencer
M. White

Support from Service Clubs and other community organizations has steadily increased over the years. In recent months the Association has benefitted immensely from financial assistance so generously given by the following groups:

Caboolture Rotary Club - $200.00 donated to the Association for the purchase of musical instruments for the Day Respite Program.

QUT Staff Community Welfare Fund - The Association received $1008.00 for the purchase of 2 light weight wheel chairs and 2 therapy chairs for the Day Respite Program.

Sherwood Forest Runners donated $250.00 towards the purchase of therapy chairs for the Day Respite Program.

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GIVE TO THE ASSOCIATION BY DONATING ONLINE

Brisbane City Council and www.ourbrisbane.com have recently established the Brisbane Gives Donation Centre. This is a secure, commission-free online donations service established through the ourcommunity.com.au National Community Giving Centre. The Association is now registered and has been assigned with an Appeal Page. We retain ownership of all our data - neither Brisbane City Council nor Our Community (which powers the service) will use any of our details in any way.

Our Community will do all receipting and will send a fortnightly email to the Association detailing all donations for that period, including donor details and addresses. All donations will be transferred into our nominated account fortnightly.

Already one of our members has decided to use this facility to show his support of the Association. If you would like to make a donation visit either: www.ourcommunity.com.au - click on 'Giving Centre Donate Now', Click on 'Give your Money' and scroll down and you will see our logo; or https://huntingtonsqld.org.au/get-involved/donate-today/ This will take you straight to our page on the Brisbane City Council site.

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