Dantrolene protects neurons from Huntington's diseasePosted 30 November 2011
Huntington's disease (HD) is characterized by ongoing destruction of specific neurons within the brain. It affects a person's ability to walk, talk, and think - leading to involuntary movement and loss of muscle co-ordination. New research published in BioMed Central's open access journal Molecular Neurodegeneration shows that the RyanR inhibitor Dantrolene is able to reduce the severity of walking and balance problems in a mouse model of HD.
Read the full story on the EurekAlert! website
Prana's Planned Huntington's Trial Receives Strong Interest From Patients and ResearchersPosted 11 October 2011
Prana Biotechnology Limited received a very positive reaction from international patient groups and researchers at this week's World Congress on Huntington's Disease in Melbourne. The company had a major presence at the Congress and the Prana team has held numerous meetings and conversations with patient groups and researchers.
Read the full story on the Market Watch website.
Renew Your Membership!Posted 3 July 2011
Your membership of the Association is due for renewal on 1 July 2011, unless you have pre- paid for the 2011/12 membership year. You can download the membership form here.
If you’re unsure of whether you have pre-paid, please call Lily at the Association office and she can advise you.
It is important for lobbying and advocacy for the Association to have a membership that is representative of all Huntington’s families and there is a “no fee” option for those who are on a pension or otherwise unable to pay the $22 fee. If you are a carer and take out a paid membership please encourage the person you care for to also join under the “no fee” option – there is strength in numbers!
You can now pay your annual membership fee by credit card. If you’d like to use you Visa card or MasterCard to pay your fees, please complete the appropriate section on the form.
The HD Outreach Service Has MovedPosted 3 July 2011
The HD Outreach Service has now moved from Lottie Stewart Hospital at Dundas to Westmead Hospital. Please note their new contact details below:
Westmead Hospital HD Service,
Westmead Hospital,
Hawkesbury Road,
Westmead 2145
Phone: 02 98459960
Getting The Data Out - A New Scientific Journal Just For HDPosted 3 July 2011
The search for better treatments for HD requires a lot of effort by researchers across the globe. Time is of the essence: the ideal time for a treatment for HD is yesterday. Data produced by all these researchers need to be made available sooner rather than later, so that others can build on what is already known. PloS is a new journal launched to speed up the process of scientific discovery in HD.
The traditional way to publish new findings is for researchers to send data with a ‘story’ to a scientific journal. A panel of experts then reviews that story, to judge whether the data and story are solid, and also whether the story is important enough to be interesting to the journal’s audience. This process is known as ‘peer review’.
This approach has advantages: it ensures that what is published is scientifically sound. Once published, articles can be retrieved via the internet sites like PubMed, and used by other scientists to guide and advance their own research.
However, there are several drawbacks, too. Firstly, the time between doing the research and the story being published can be very long. Sometimes the story has to be offered to several journals, one after the other, before it is eventually published. Several years can pass like this.
Secondly, most journals survive by selling copies, so they have to rate the importance of each story. Anything that might not be interesting to that journal’s audience is likely to be rejected, even if the story is scientifically sound.
That introduces bias to what’s available in the scientific literature. It favours exciting stories, but makes it difficult to publish solid, well-conducted scientific research if the results are less glamorous – for instance, if they show that a particular approach, idea or experiment has not helped. These are known as ‘negative results’.
Another problem is that a complete scientific ‘story’ might take five or ten years to research from start to finish. Along the way, interesting data might be produced, but because they don’t tell a complete story, they are unlikely to be published and seen by other researchers.
“Negative data”, or data that don’t make a complete story, can still be really useful to other researchers. For science to make progress, knowing what doesn’t work can be as useful as knowing what does.
Imagine ten researchers in different places, working on similar scientific projects, that could have been shown to be pointless already, if someone had published a single negative result. All that effort, time and money could have been put to much better use.
A new platform for publishing was launched in September 2010, aiming to make HD research more efficient by publishing the results that would otherwise never be seen, and shortening the time it takes to get data published.
This platform is called Public Library of Science (PloS) Current Huntington Disease and is supported by the CHDI Foundation.
Neutrons provide first sub-nanoscale snapshots of Huntington's disease proteinPosted 20 May 2011
Researchers at the Department of Energy's Oak Ridge National Laboratory and the University of Tennessee have for the first time successfully characterized the earliest structural formation of the disease type of the protein that causes Huntington's disease. The incurable, hereditary neurological disorder is always fatal and affects one in 10,000 Americans.
Novel mouse model provides insight into rare neurodegenerative diseasePosted 12 May 2011
New research sheds light on common pathogenic mechanisms shared by Huntington's disease (HD) and HD-like disorders. The study, published by Cell Press in the May 12, 2011, issue of the journal Neuron, uses a new transgenic mouse model for an HD-like disorder to unravel complex molecular events that drive disease pathology.
Read more about this research.
Huntington Society "like my child," Ariel Walker saysPosted 4 May 2011
CAMBRIDGE — Ariel Walker only knew one person with Huntington’s disease when she started a national support organization with her husband, Ralph, almost 40 years ago. Since then, the Cambridge woman got to know many people affected by the fatal neurological disease and is determined to keep working to offer support and hopefully an effective treatment. Those people are the reason she stays involved with the Canadian charity.
Read the full story on The Record.com website.
UMMS researchers develop new technology to screen and analyze genetic mutationsPosted 14 April 2011
WORCESTER, Mass. – A single change to even one of the thousands of DNA codes that make up each gene in the human genome can result in severe diseases such as cancer, cystic fibrosis, muscular dystrophy or Huntington's Disease. A similarly minor change in the DNA of a virus or bacteria can give rise to drug resistant strains that are difficult for physicians to treat with standard drug therapies. For these reasons, scientists have long sought ways to study the effects genetic mutations can have on an organism but have been hampered in these efforts by an inability to easily and efficiently produce and analyze the thousands of potential changes possible in even one small gene.
A new study by scientists at the University of Massachusetts Medical School, published in Early Edition of the Proceedings of the National Academy of Sciences online on April 4, describes a novel technique to produce all potential individual mutations and using deep sequencing technology simultaneously analyze each change's impact on the cell.
More information on the EurekAlert! website. UK Insurers Agree to Extend Ban on Using Genetic TestsThe Association of British Insurers announced the extension of an agreement under which the results of genetic testing will not be used to deny insurance to applicants.
The agreement, known as the Concordat and Moratorium on Genetics, will now run until 2017. It was introduced in 2001 after agreement between the industry and the U.K. Department of Health.
Like to know more? Visit insurancenewsnet.com.
Huntington's disease protein has broader effects on brain, study showsPosted 14 April 2011
In Huntington's disease, the mutant protein known as huntingtin leads to the degeneration of a part of the brain known as the basal ganglia, causing the motor disturbances that represent one of the most defining features of the fatal disease. But a new study reported in the April issue of Cell Metabolism, a Cell Press publication, shows that the mutant protein also is responsible for metabolic imbalances in the hypothalamus, a brain region that plays an important role in appetite control.
"This helps to explain metabolic changes and increases in appetite that have been observed in people at the early stages of disease," even before any motor symptoms appear, said Åsa Petersén of Lund University in Sweden. "It should encourage us to do more clinical studies. If we really understand the pathways that are affected, it may lead to new targets for intervention."
Read the full story on the EurekAlert! website.
Expressions of interest from members in or around the Wagga Wagga, Albury and NSW South and Sapphire Coast areasPosted 24 February 2011
The Association is planning to make a trip to the Wagga Wagga, Albury and Sapphire and South Coast areas in the first half of this year and would like to hear from members and service providers who feel they need support and education in the care of their relative, friend or client with Huntington’s Disease. Please contact the Association on 9874 9777 or email me ramona@ahdansw.asn.au to let us know what your needs are and we will endeavour to do our utmost in supporting you.
Developments on the Far North CoastPosted 24 February 2011
I (Mark Bevan) am planning a trip to the far north coast of NSW in April this year. I will be linking up with the Queensland Association, who currently provide support to Huntington’s families in the far north of NSW, and working with them on how the NSW Association can assist in providing support to Huntington’s families in that area.
In addition to that, I will be visiting other areas on the north coast down to around the Kempsey area. The preliminary plan is to travel in the week beginning April 11, and visit as many people as possible, catch up with some Qld Association workers, meet with Huntington’s families and related health professionals near the border, and those further south, down to around Coffs Harbour and Kempsey. If you live in any of the areas I have mentioned, I would love to hear from you – you can email me mark@ahdansw.asn.au or call me on 0410 629 850.
Do you live in or near Broken Hill? Armidale? Tamworth? Dubbo? Orange?Posted 24 February 2011
Do you live in or near Broken Hill? Armidale? Tamworth? Dubbo? Orange?
To say I am excited is an understatement!
I am planning visits to Broken Hill, Tamworth, Armidale, Dubbo, and Orange in the first half of this year.
I will be contacting genetic counsellors, health centres, various medical professionals, and Association members in preparation for the trips, with a view to meeting on my trips as many Huntington’s families and associated health professionals as possible, so that we can understand how to more effectively support them in the future.
I would love to hear from you if you live and/or work in these areas. Just email me mark@ahdansw.asn.au or call me on 0410 629 850.
How disordered proteins spread from cell to cell, potentially spreading diseasePosted 24 February 2011
One bad apple is all it takes to spoil the barrel. And one misfolded protein may be all that's necessary to corrupt other proteins, forming large aggregations linked to several incurable neurodegenerative diseases such as Huntington's, Parkinson's and Alzheimer's.
Stanford biology Professor Ron Kopito has shown that the mutant, misfolded protein responsible for Huntington's disease can move from cell to cell, recruiting normal proteins and forming aggregations in each cell it visits.
Collaboration to advance therapy for Huntington’s DiseasePosted 28 January 2011
UMass Medical School has entered into a research collaboration with pharmaceutical company Lundbeck Inc. aimed at further development of a targeted therapy to slow or halt the progression of Huntington’s disease (HD).
Read the full story at EurekAlert.
Genetic research offers hope of improved treatment for Huntington's diseasePosted 27 January 2011
Research led by the University of Leicester in the UK has raised hopes about possible new treatments for devastating neurodegenerative disorders such as Huntington's disease, for which there is currently no cure. The trans-Atlantic team of scientists made the discoveries using cutting-edge genetic techniques. The study was partially funded by a Marie Curie grant under the EU's Seventh Framework Programme (FP7), and has been published in The Journal of Biological Chemistry.
Read more at the European Commission CORDIS website.
Four UBC professors appointed to the Order of CanadaPosted 9 January 2011
Four professors and three members of the UBC community have been named to the Order of Canada, one of Canada’s highest civilian honours. The Order of Canada recognizes a lifetime of achievement and contribution to society.
Dr. Michael Hayden, a professor in the departments of medicine and medical genetics at UBC and the director of the Centre for Molecular Medicine and Therapeutics at the Child and Family Research Institute, was appointed a Member of the Order of Canada. This honour recognizes Dr. Hayden’s contribution to our understanding of Huntington’s disease and other genetic disorders.
Read the full story at the website of the University of British Columbia.
We have a new name!Posted 6 January 2011
Huntington's New South Wales is the trading name of the Australian Huntington's Disease Association (NSW) Inc., which remains our incorporation name. This name change was adopted by members at the recent AGM and follows recent name changes to the other state associations and to the national association.
All our contact and other details remain the same.
Huntington's symptoms appear a decade before diagnosisPosted 4 December 2010
People with Huntington's disease show symptoms more than a decade before they are likely to get a clinical diagnosis. These early effects of the disease don't affect day-to-day functioning, but they will help drug developers evaluate treatments that target the early stages of the disease.
Read more about this Australian research on the New Scientist website.
Our HD SpacePosted 7 October 2010
Our HD Space is the new website for younger people. There you can find information about HD in 3 categories specifically written for younger people aged 8 to 12, 13 to 17 and the over 18s. The website also has some great information about getting involved and an ‘Ask a Question’ section where younger people can post a question and get a reply from one of the panel of experts linked into the site. The site also has links to My Space and facebook so younger people can meet other younger people who are in the same situation as them online.
New Central Coast Support Action GroupPosted 3 June 2010
The people organising the Fundraising Event at Mingara are also setting about creating a support action group for HD suffers and their families on the Central Coast.
For more information contact Ian Kilpatrick on (02) 4324 5400 or at ian@axiompsych.com.au, Holly 0401 203 198 or Mark Bevan from the Association on 0410 629 850 or at mark@ahdansw.asn.au
Fighting Huntington's disease brings together Cleveland researchers from several fieldsPosted 2 June 2010
A rare meeting of some of the brightest investigators involved in local brain, genetics and cancer research took place over a 48-hour period recently in Cleveland, a collaboration that Case Western Reserve University pathologist Alan Tartakoff hopes will make the city a hub for research into Huntington's disease.
Read the full story on Cleveland.com
Faulty Clean-Up Process May Be Key Event in Huntington's DiseasePosted 31 May 2010
ScienceDaily (Apr. 25, 2010) — In a step towards a possible treatment for Huntington's disease, scientists at Albert Einstein College of Medicine of Yeshiva University have shown for the first time that the accumulation of a mutated protein may explain damaging cellular behavior in Huntington's disease. Their research is described in the April 11 online edition of Nature Neuroscience.
Read more on the ScienceDaily website.
Do you live in Canberra Region and Surrounds?Posted 31 May 2010
Do you live in the Canberra Region and surrounds, and have Huntington’s Disease or care for someone who does? Daryl Heavies is a dedicated carer who would like to meet people who deal with HD in their daily lives, and with the help of the Huntington’s Disease Association, would like to start up a support group in Canberra. If you are touched by HD, and would like to get to know people in similar situations, discuss ways of coping, share your feelings and just connect with others who understand you, call Ramona at the Association on (02) 9874 9777. She will put you in touch with Daryl.
Staff UpdatesPosted 31 May 2010
Ramona Watts, Family Support Coordinator
Ramona was formerly our Family Support Officer. In her new role, she will continue to be based in our West Ryde offices and will run our Social Club with Lily Ma, as well as reaching out to our carer's and clients in the Sydney and Canberra region.
Email: ramona@ahdansw.asn.auMark Bevan, Family Support Officer
Mark will be based on the Central Coast and his position will have the primary focus in the team of meeting the needs of the Central Coast and Mid North Coast area.
Email: mark@ahdansw.asn.auToni Zhang, Administration Officer
Toni will be based at the West Ryde offices.
Email: toni@ahdansw.asn.au Staying active delays Huntington's diseasePosted 29 May 2010
Melbourne researchers have made a breakthrough in the research into Huntington's disease, a genetic condition that inevitably leads to dementia and a shorter life. In a world-first study, scientists have found that leading a more active lifestyle can delay the onset of symptoms.
Read the full story on the ABC News website.
Do-It-Yourself Genetic TestsPosted 27 May 2010
LONDON – If you were hoping to pick up a DNA kit along with your shampoo from the drugstore, you would be out of luck. The United States Food and Drug Administration recently warned the giant pharmacy chain Walgreen’s to think twice before stocking personal genetic testing kits. As an FDA spokeswoman said, "These kits have not been proven safe, effective or accurate, and patients could be making medical decisions based on data from a test that hasn’t been validated by the FDA."
Read more at the Project Syndicate website.
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