Chester Clinic

 

Gateway summer 2008

Volume 10 No 4 Australian Huntington's Disease Association (NSW) Inc
Summer 2007/08
From the Editor
There were several changes to A Time For Change the Association's staffing towards the end of 2007. In New Housing in the Newcastle Area
December we regretfully In our last issue we advised you that the Association was intending farewelled Karen Bevan, our to close Camellia Cottage and surrender the lease of the property. A much-loved Activities meeting was held between the Association, Office of Community Coordinator, who elected to Housing, Hunter Genetics and Compass Housing Services in mid- retire after six and a half years September to organise this. with the Association. In accepting early surrender of the lease the Office of Community Karen, who had foreshadowed Housing agreed to make available two 1-bedroom units in the her retirement at the beginning Newcastle area, to be used for housing people with Huntington's of 2007, had been running the Disease. A further 2 units may be made available in the 2008-09 lunch and social clubs, as well as organising the activities component of the holiday These properties will be managed by Compass Housing Services, a community housing organisation who have been managing Camellia Cottage on our behalf and who have demonstrated a very Earlier, Robert Curran resigned professional and caring attitude to the residents of the Cottage. The at the end of October, after social worker at Hunter Genetics will continue to be able to nominate almost 7 years as our tenants for these properties. Hunter Genetics and Compass Housing Administration Officer. Services will enter into what is known as a Support Agreement to Robert also filled in as the govern these arrangements. Executive Officer for most of the period between Robyn Kapp's Existing tenants were relocated in late 2007, with the remaining departure on extended leave in furnishings being distributed between the occupants of the new January 2006 and the arrival of units. The Association also paid for relocation costs. Ms Jacqueline-Marie Bohm in The Association is grateful to the other parties involved for an outcome which preserves the availability of dedicated housing for Continued on Page 2 people with Huntington's Disease in the Hunter region.
Social Clubs
Due to the staffing difficulties mentioned elsewhere in this issue the
Inside this issue
fortnightly Lunch Club, which catered mainly for residents of Huntington's Lodge at Lottie Stewart Hospital, has been suspended. This decision will be reviewed later in the year. The Social Club, which caters for those still living in the community Camp Breakaway 2008 will continue, although with some restrictions initially on what can be Finding Facts on the offered in terms of off-site excursions. Clinical Trial Update Get Ready To Yell Your Continued on Page 2 Continued from Page 1 From the Editor (cont.)
Subsequent to Robert submitting his resignation Ms Bohm also resigned. This left the Association in a somewhat difficult staffing situation, which is yet to be fully remedied although recruitment action will commence shortly. Robert has returned to the position of Administration Officer on a casual basis to help tide things over until permanent arrangements can be made. Helen Bobbitt has also generously volunteered to help with the bookkeeping aspects of the Association. Lily Ma has been recruited to assist with administration tasks. So, for the next month or two the Association's paid staff comprises: Administration Officer Robert Curran (Monday, Tuesday, Friday) Carer Support Coordinator Maria Mackell (Tuesday to Friday) Administration Assistant Lily Ma (Monday to Wednesday) A Time For Change (cont.)
Our Thanks to the
Subject to demand, we also plan to introduce a new Macquarie Group
Club, tentatively called the Coffee Club, which will Foundation
meet monthly. This is intended for people in the very early stage of Huntington's Disease (for example, those who have had to give up work or switch to part-time work). It will meet away from Elsie Court Cottage at various locations in the Sydney area depending upon the activity of the day. These activities will be The Association gratefully acknowledges such things as movies, visits to art galleries, a donation of $1000 from the Macquarie museums etc and will be selected by the members Group Foundation. of the club. Coffee or a light meal before or after the activity will provide an opportunity for social Staff of the Macquarie Group who have attained a length of service of 10 years are able to nominate a charity to receive To be eligible to join you must be able to travel a donation of $1000. We are most independently on public transport such as trains and appreciative of the kindness of the staff buses and not need a modified diet. member who was responsible for For all enquiries about the Social or Coffee Clubs contact either Maria or Robert at the Association's Huntington Happenings
Camp Breakaway 2008
The next Holiday Camp for people with Huntington's Disease will be held at Camp Breakaway at San Remo on the Central Coast between Tuesday the 1st and Friday the 4th of April. Last year's camp was for residents of Lottie Stewart Hospital so this camp will be for those living in the community. To be eligible to attend the holiday camp you must be able to walk, sit, stand, dress, undress, shower, eat, drink and use the toilet without requiring assistance. However if a carer is accompanying you we will assess your eligibility on that basis and through discussion with your carer. For all enquiries about the Holiday Camp contact either Maria or Robert at the Association's office. Applications from those who have not previously attended a camp are especially welcomed. APPLICATIONS CLOSE ON FRIDAY 29 FEBRUARY 2008.
Annual General Meeting
There was a pleasing attendance of 31 people at last year's Annual General Meeting, which was held on the evening of Friday 23 November 2007. This included a number of country carers, in Sydney to attend a Country Carer's City Holiday. Guest speaker Nicolas Patrick, National Pro Bono Director of DLA Phillips Fox presented an entertaining talk about the legal issues faced by people with HD and how his firm has been assisting through its partnership with the Association. A number of minor changes to the Association's constitution were approved. The revised constitution may be read on-line at www.ahdansw.asn.au/association/constitution.pdf or contact us at the Association's office and we will post you a printed copy. Elections for officers and board members resulted in the following being elected: Huntington Happenings
Need A Cheap
Calling all Country and
Computer?
Western Fans

US Country & Western legends Brooks and Dunn
will be performing in Sydney on March 10 at the Acer Arena (http://www.acerarena.com.au) (formerly the Sydney Superdome). Brooks and Dunn are the authors of the song" Boot Scootin Boogie" and have won the award of top Country Duo Award nearly every year from 1990-2006. (http://www.brooks-dunn.com/ site.php) They play 80 concerts a year and generally in venues that seat 10,000-12,000. Trey Gray, the drummer for Brooks and Dunn, is considered one of the best modern drummers in Do you know anyone that would today's music scene. He is a native of Indiana but has benefit from owing a computer? lived in Nashville, TN since 1991. He is the father of children ages 3, 8, and 17. Trey was diagnosed Wesley E-Recycling, an activity of approximately 3 years ago with HD and he has now Wesley Mission (a non-profit come forward with that information, hoping that his organisation), specialise in celebrity would help get out the HD story. He wants refurbishing computers for to create awareness of the disease within the general individuals, families and community and help raise vitally needed funds. He community organisations. has gone on YouTube to talk about HD: http:// They have a range of low cost computer packages to suit all The Association has been offered the opportunity to distribute information leaflets about HD at this Healthcare card holders and non- (Note: In a recent paper published in Cognitive and profit organisations receive Behavioral Neurology, J. M. Ringman explores the art Microsoft Windows XP software of Woody Guthrie in relation to the development of the overt behavioral changes and chorea that characterized his illness. Woody Guthrie was the Call 02 8892 2880 for more American songwriter, musician, writer, and political information or visit their website activist who died with Huntington's disease (HD) in www.wesleycomputers.org for 1967 at age 55. His relatively brief creative life was details and pricing. incredibly productive with countless songs and a tremendous volume of letters to his name. His personal life was similarly driven with Woody having had 3 wives and at least 9 children and an insatiable appetite for travelling the United States. Woody's ex- wife, Marjorie Guthrie, was instrumental in the setting up of the first organisation in the USA dedicated to finding a cure for HD. She also influenced the formation of many Huntington's Associations around the world, including ours.) Youngcare
Youngcare is a nationally registered charity and non-profit organisation formed to help young Australians with high care needs such as those with HD, acquired brain injury or MS. Youngcare's aim is to raise awareness of the issue and through partnerships with Community, Business and Government representation seeks to develop viable, sustainable accommodation solutions that provide the care and dignity we all deserve. The first Youngcare Apartments in Brisbane opened on 8 December 2007. The design consists of 14 large, one-bedroom self-contained apartments with courtyards and balconies, coupled with state of the art facilities. During March 2008 a small team will be walking the 300 kms from Canberra to Sydney to raise both funds and public awareness of young people in nursing homes and specifically Youngcare. The walk will conclude at the televised NRL match at Parramatta Stadium between the Eels & Knights and the walk will be followed by a Gala Dinner the following weekend at Hilton Sydney. The walk will start on the 18th of March and finish on the 28th of March with the teams walking approximately 30 kilometres each day. With celebrities, sportspeople and politicians joining the walk on some days, it's sure to attract a lot of attention so look for publicity in your local area and give them a hand as they go by. More information is available on-line at by email to: or telephone: • David & Katrina Sexton 0439 962 964 or (02) 9629 6406 • Troy & Sonya McPhee 0400 662 770 or (02) 8824 3853 • Andy Kirk 0411 300 366. Research Surveys
From time to time the Association is asked by researchers to facilitate the distribution of surveys or "invitations to participate" to our members. You may have received one or more of these surveys in the last year. As a service to the research community we do attempt to meet these requests. However before we do so we ensure that the specific research project has been approved by the Research Ethics Committee of the sponsoring institution. To protect your privacy we don't provide members name and addresses to the researchers. We ask for the material to be provided to us in unaddressed and unsealed envelopes and we address them ourselves. We also include a letter from the Association explaining that you are receiving the material under these arrangements. Members are under no obligation to respond to these requests although we encourage you to do so. Finding Facts on the Net
Surfing the Internet for information about health has become a common online activity. In fact, the Internet has become a primary source of health information for many Americans. The Pew Internet & American Life Project recently reported that people with disabilities and chronic conditions such as HD are some of the most avid users of Internet health sites and that their online searches affected treatment decisions, their interactions with their doctors, their ability to cope with their condition, even their diet and fitness routines. People are taking what they find on the Internet very seriously. Unfortunately, when it comes to information on the Internet it falls entirely on the user to determine the value and truth of what they read. Anyone can publish on the Internet and there is plenty of information that is untested, inaccurate, even dangerous. Because there is such a vast amount of information (and mis-information) to be found online, it is extremely important to use safeguards when surfing the web. When you use a search engine, such as Yahoo or Google, to research a medical topic, you may be confronted with a list of thousands of websites, with no guidance on their quality or accuracy. Some websites are commercial, designed to sell things. Some are filled with unsupported information and conjecture. Some websites want you to believe that there are miracle cures that are being withheld from the public. To find reliable information, it is wise to start your search on the websites of reputable organizations: government agencies, not-for-profits and entities known for their integrity. As an example, Healthfinder.gov is a website sponsored by the Office of Disease Prevention and Health Promotion for the U.S. Department of Health and Human Services. It is a solid starting point for finding legitimate, up to date health information from a variety of sources. (In Australia, Health Insite (www.healthinsite.gov.au), operated by the Commonwealth Department of Health and Ageing, performs a similar function.) HDSA's own website (www.hdsa.org) has links to resources, current research and a wide variety of publications you can download. Other good sources of information are the National Institutes of Health (www.nih.gov), the National Institute of Neurological Disorders and Stroke (www.ninds.nih.gov), the HD Lighthouse (www.hdlighthouse.org) and the Huntington's Disease Advocacy Center (www.hdac.org). When you find interesting research on the Internet and want to share it with your doctor, try to narrow the information down to the most important points you wish to share and show the doctor that you have garnered the information from a reputable source. While more and more doctors are accepting their patients' internet research and will gladly discuss what you have found, your doctor may not have time to look through a mass of website printouts. It can be encouraging to stay abreast of current research trends using the Internet. Scientists and investigators around the world are diligently striving toward breakthroughs in understanding and treating HD and its symptoms. The Huntington's Disease Society of America (HDSA) and its partners, CHDI, Inc., and the Huntington Study Group are working to expedite the movement of basic research into effective treatments for the disease through the HDSA Research Pipeline for Drug Discovery, which you can read about elsewhere in this newsletter. (Acknowledgement: Reprinted with minor modifications from "The Marker", November 2007 (Magazine of the Huntington's Disease Society of America) Research News
Clinical Trial Update – The Huntington Study Group
At the end of the Huntington's Disease Society of America (HDSA) pipeline for drug discovery are clinical
trials which bring the most promising compounds for treatment to people with HD. HD families are
encouraged to participate in the many clinical and observational trials that are conducted at HDSA Centers
of Excellence and other HSG sites.
The HSG continues to be very active in the
Huntington's Disease research arena. Efforts
are focused on finding treatments that make a
difference for HD.

The HSG continues to be very active in the Huntington's Disease research arena. Efforts are focused on
finding treatments that make a difference for HD. HSG research trials cover a wide spectrum within the
Huntington's Disease community. The following overviews describe the most current HSG research trial
activity.
Trials Recently Completing Enrollment
TETRA-HD completed enrollment of 84 participants in December 2003. Tetrabenazine is a drug widely
available in Europe and Canada. It eases one of the most disabling symptoms of Huntington's Disease,
involuntary writhing movements known as chorea, according to a study published in February 2006
[Neurology 2006;66:366-372]. Prestwick Pharmaceuticals, Inc., the study sponsor, has filed a New Drug
Application with the FDA to market the product for treatment of chorea in the United States. Review of
the application is pending.
PHEND-HD completed enrollment of 58 study participants in January 2006. The study was designed to
gather information on the safety and tolerability of the experimental drug phenyl butyrate.
This compound inhibits histone deacetylase (HDAC), an essential component of the body that "turns on"
or stimulates genes. Phenylbutyrate may be a potential drug therapy in HD by directly helping to turn on
genes that are blocked by HD. The potential benefit of phenyl butyrate in people with HD has never been
established. The analysis of the data is ongoing.
DOMINO completed enrollment of 114 participants in May 2007. Participants are still undergoing study
visits. Recent studies in a mouse model of HD have demonstrated that minocycline helps to slow down
the clinical onset of HD and prolongs life. In a previous HSG trial, minocycline was shown to be safe and
tolerable in HD patients at doses of 100 mg. and 200 mg. per day over 8 weeks of use [Neurology 2004:
63:547-549].
TREND-HD was designed to determine the effect of the experimental medication ethyl-EPA on the motor
(movement) signs and symptoms of HD. Forty-one North American HSG research sites evaluated 316
participants with early signs of HD. Preliminary results announced in April 2007 showed no statistically
significant difference between those taking the experimental drug and those on placebo over six months
of study. There was no evidence in the preliminary analysis of any major safety concern. Further
evaluation of the data is currently taking place.
Continued on Page 8 Research News
Trials Currently Enrolling
DIMOND B is a clinical study using a research medication, Dimebon, in patients who have mild to moderate
Huntington's Disease. Dimebon is an investigational medication that has been shown to inhibit brain cell death
in models of HD and Alzheimer's disease (AD). In a 12-month study of patients with Alzheimer's, Dimebon was
well-tolerated and significantly improved cognition and memory, behavior, activities of daily living and overall
function when compared to placebo. The current HSG study will assess the effects of Dimebon on cognition,
memory, behavior, and motor function of HD patients, as well as the safety and tolerability of the drug when administered over a 3-month period. DIMOND B is seeking to enroll approximately 90 study participants. PREDICT-HD began in September 2001 to study healthy persons who are known to have the CAG expansion in the HD gene. The intention of the study is to gather essential information on the early stages of HD in order to develop drugs that can slow or postpone the onset of the disease. To date 992 participants have enrolled in the study. Gene negative participants can still enroll in this important project. COHORT is a long-term observational study taking place at 40 North American and Australian HSG sites. The goal of COHORT is to collect information from individuals who are affected by HD and those who are part of an HD family, in order to learn more about HD, potential treatments, and to plan future research studies of experimental drugs aimed at postponing the onset or slowing the progression of HD. This study is recruiting both adults and children who have clinically diagnosed HD and adults who are apart of an HD family. Individuals who choose to participate will have one study visit every year. There are currently 864 participants enrolled in COHORT. RESPOND-HD is an observational trial looking at issues of potential discrimination in those affected by HD. The information gathered in this study will allow researchers to examine the experiences of persons who have undergone genetic testing for HD or those persons who are at risk for HD. Study participants from PHAROS and PREDICT research studies are being recruited for this study as are those from geographical areas where there are differing discrimination laws for employment and insurance, and also from foreign sites where health care systems may be different from domestic sites.
Upcoming Trials
NIH approved funding for the 2CARE study of coenzyme Q10 versus placebo in individuals with mild to
moderate Huntington's Disease. The initiation of the study was delayed by the FDA who requested additional animal testing since the 2CARE study is investigating a much higher dose (2400 mg. /day). With the additional testing completed, the FDA has now given permission for the study to proceed. Enrollment of participants at
approximately 46 sites in North America and Australia should begin in early 2008.
PREQUEL is a trial to test the tolerability and biological activity of coenzyme Q10 in those with pre-manifest
HD. A grant was submitted in July 2007 to the National Institute of Neurological Disorders and Stroke (NINDS).
PREQUEL has received positive feedback and plans are being finalized with NINDS. Christopher A. Ross, M.D.,
Ph.D., is the principal investigator and Kevin M. Biglan, M.D., M.P.H., is the co-principal investigator.
CREST-E, a trial to test the safety, tolerability and efficacy of creatine in persons with HD, is scheduled to
move ahead. As of November 2007, funding has been secured from the National Center for Complementary
and Alternative Medicine (NCCAM) and the FDA Orphan Products Division. Steven Hersch, M.D., Ph.D. is the
Principal Investigator.
For more information on these studies and how to participate, please see the HSG website:
().
(Acknowledgement: Reprinted from "The Marker", November 2007 Magazine of the Huntington's Disease Society of America) Carer News
t just sit there! Do something! We know there are many benefits from participa ting in activities with the person we care for. But sometimes its hard to think of interesting or stimulating things to do with "your" person. An activity that can be shared or enjoyed by both you and the person you care for, can turn an ordinary day into a positive experience for you both.
We have recently come across two carer resources that we feel are worth letting you know about.
Both of these have been produced by Alzheimer's Australia, for carers of a person who has Alzheimer's
disease, but, we have found much that would be very relevant to people with Huntington's Disease.

The Activity Book for Carers
This activity booklet has been developed to assist carers to match activities
with the needs, abilities and interests of the person they care for.
It presents some guidelines for helping the person you care for, perform
activities. What may work for one individual will not necessarily work for
another, but the booklet offers advice and guidelines on working out what the
person you care for would enjoy, and the ideas on adapting activities are quite
helpful.
The Personal Life History Booklet
We were introduced to this booklet at an information day that was part of the Country
Carers City Holiday in November, and it was such a hit with the carers. It provides a guide
to writing up a simple life history for the person you care for. It includes ideas for
rekindling memories and tips on presenting the information.
This would be a delightful gift for the person you care for and something you can create
together.
Note: While we recommend these as useful resources, we do need to tell you that they have not been "reviewed" by HD specialists or allied health staff, so take this into consideration when adopting the ideas or planning activities. Interested? Please phone the office and ask Maria for a copy of either of these, and we will post you one. Carer News
A New Focus on Family Support
Since the Carer Support Program began in mid 2005, the Association has had contact with over 100 carers, through individual requests for information or support, activities, meetings or workshops and through the Carers holidays etc. From this contact, our awareness of the issues that impact on carers and family members has grown. However, we are also more aware of issues that carers want addressed. As we plan our activities for 2008, these are significant factors in deciding what we do. Another factor is the changes that have occurred in other programs within AHDA. With the retirement of the Activities Officer Karen Bevan, late last year, we decided to look at the client activities (such as Lunch and Social Clubs and the Holiday Camps), and to see how we could best provide these services. At the same time, changes to the Administration Officer position, meant that Information and Referral tasks would also need to be re-assigned. We have decided that all the activities provided for people with HD, or for their carers, including information/referral, Social Clubs, Holiday camps and Being pampered at the
"Country Carers City
Family meetings etc would be better described as Family Support.
Holiday",
November 2007
This more "holistic" approach means that program staff members will have a wider area of responsibility (i.e. both people with HD and carers) and more contact with members. This will range from the initial contact or phone call through to participation in activities, meetings etc. This change in focus fits well with how members see themselves. We have often been told: "I'm a husband, (or a wife, son or daughter), rather than a "carer", so we feel there may be more people comfortable with joining an activity that comes under the umbrella term of Family Support. There will be two Family Support Officers who will share roles and each will have responsibility for covering specific country areas as well. So the Social clubs for people with HD, or specific activities for carers, or family activities (for both groups) will be staffed by the same Family Support Officer. This will lead to a more integrated approach, and it will also be more cost effective for the Association. Continued on Page 11 Enjoying great company and a great
location at the Aquila Beach House
Members attending an info session
Holiday, August 2007
at the "Country Carers City Holiday",
November 2007
Carer News
Continued From Page 10 So, what would you contact a Family Support officer for?

•
Information and referral (in the office or in our "outside work" i.e. country visits, An individual carer or family member consultation (in the office or in our "outside work" e.g. country visits, meetings etc.). Organisational and community level consultations and support for families and carers (from the office and in outreach work) Finding out about our "specific" activities such as Social Club for people with HD, or specific activities for carers only. Finding out about our "joint" activities such as Family meetings, Camps, etc. Finding out about our "Country Visits" and meetings.
We will shortly be advertising for an additional Family Support work person. For further information
please contact Maria Mackell on (02) 9874 9777 or STD Freecall 1800 244 735 (Country NSW only).

Get Ready To Tell Your Story!
We all know that being connected to others is good for us and good for communities. Telling our story, and sharing our experiences with others builds our identity and connects us to other generations. So we have drawn up a series of family days and workshops which we are calling: Our HD Family Stories Days. The days will be a combination of a social activity and a special ‘skill' workshop. We are planning these for Sundays (March - June) so people working weekdays can also join in, and if country members wish to join us, there is time for travel. Each workshop will be a ‘standalone' so you can come to one or come to all of them! Or you can come for the social part and not attend the workshop, or vice versa. It's up to you. The focus for each day will be: A chance to catch up with other HD families Delicious refreshments A special workshop presented by an expert! Presentations will include: Writing your story Using art to tell our stories Preserving family stories and memories Digital Story Telling - Making a DVD – about you - for others Creating a blog – develop a space to share your thoughts and experiences with others. If you are interested in attending, or contributing in some way, please contact Maria Mackell on 9874 9777 or STD Freecall 1800 244 735 (Country NSW only). Australian Huntington's Disease
Association (NSW) Inc
‘Gateway' is the newsletter of the Australian Huntington's Disease Association (NSW) Inc. PO Box 178, West Ryde, NSW 1685 21 Chatham Road, West Ryde, NSW 2114 AHDA (NSW) Inc
Telephone: (02) 9874 9777 Facsimile: (02) 9874 9177 STD Free Call: 1800 244 735 (Country NSW only) The Australian Huntington's Disease Web Site: www.ahdansw.asn.au Association (NSW) Inc is a not-for- profit organisation established in 1975. Association and Other Useful Contacts
Our Mission
The energies and resources of the Jeanette Moxon
Australian Huntington's Disease Executive Officer Association (NSW) Inc are directed Lottie Stewart Hospital towards satisfying the needs of people Robert Curran
with or at risk for Huntington's Disease Administration Officer and their families in NSW and the ACT Huntington's Lodge
by providing and/or facilitating delivery Maria Mackell
Joan Stewart
of a range of quality services. Carer Support Coordinator Nursing Unit Manager Lottie Stewart Hospital Activities Coordinator Nursing Staff
People with Huntington's Disease and Huntington Disease Service
their families are individuals with equal Dr Elizabeth McCusker
Predictive Testing
value to all other members of Fiona Richards
Australian society, with the right to Westmead Hospital treatment and care by knowledgeable (02) 9845 6793 (leave message) The Children's Hospital, Westmead professionals and care givers, the right Lottie Stewart Hospital to appropriate support services and the right to have the best quality of life (Tuesday afternoon) Hunter HD Service
John Conaghan
HD Clinic Appointments
Our Services
Outpatients Department Hunter Genetics, Westmead Hospital These include education and information; advocacy; counselling and referral; holiday programs; family Outreach Service
support; rural outreach and client Suzie Docherty
Westmead Hospital Vice President Anne Low Westmead Hospital Secretary: Keith Treasurer: Richard Angela Lownie
Clinical Nurse Consultant, Lottie Stewart Hospital

Source: http://www.huntingtonsnsw.org.au/sites/default/files/documents/gateway/gateway_summer0708.pdf