10 December 2009

Members Christmas Party

Incorporating a rousing performance and sing along to 70s disco song “We are family”, this year’s Christmas Party was thoroughly enjoyed by all Members, volunteers and the big guy; Santa.

Everyone was treated to a fantastic Christmas lunch and brilliant entertainment; from the faithful Occupational Therapy crew, three talented Les Misérables cast members (from last year’s production) who performed “A Heart Full of Love”, and Winnie Berry acting as our own concert pianist. And without going into embarrassing specifics we would just like to thank our senior management team for their hilarious Priscilla Queen of The Desert act.

Thanks to everyone who was involved in making the party a wonderful success, and special thanks to the staff at QBE Insurance who kindly volunteered their time to assist in the smooth running of the event, and their generous donation.

24 October 2009

2009 Annual General Meeting

On Saturday 24th October, The MS Society of Western Australia conducted its Annual General Meeting. MS Society President, David Barnes (pictured) chaired the meeting.

The presentation of reports included detail of the financial surplus, growth in healthcare services by 18.2% and a record contribution to research. A progress update was given on the City of Cockburn high support residential facility that is scheduled for completion in mid 2010. Further information was also provided on the residential and respite facility planned for Bunbury.

Newly elected Directors were welcomed to the Board, and retiring Directors during the year (Kathryn Buttfield and Professor Tanya Packer) were thanked for their valued contribution.

The MS Society’s Annual Report is available through this website under the heading ‘About Us’ and then follow the link to ‘Annual Report’.

19 August 2009

Hamilton Hill High Support Facility

Construction of the MS Society’s new high support accommodation facility at Redmond Road Hamilton Hill has finally commenced.

The facility comprises 6 bedrooms and will offer 24 hour, seven days a week care for people with high support needs.

Construction is scheduled to be completed in June 2010 for occupation in July.

18 August 2009

Another Successful Year for Member Services

Year on year the MS Society of WA has been able to increase the provision of services to its Members by an outstanding 18.2%.

This means real things to real people. More physiotherapy, massage, hydrotherapy, nursing, respite and associate care. It also means that more newly diagnosed Members have received help and more people are empowered to stay living in their communities and in their own homes.

Since 2003/04, the MS Society has achieved cumulative growth of 103% in services provided to Members - a fantastic result.

This year the MS Society of WA has also made a record contribution to research, supporting three ground-breaking projects with our extra contribution.

We are proud to be able to support Dr Jennings at the University of Western Australia with her work on nerve sheath repair, a separate project exploring how pregnancy affects MS and also a project exploring cognitive, behavioural and social skills in childhood-onset MS. We know that every step taken is another step closer to a cure.

None of this would have been possible without our exceptional supporters. Thank you for your outstanding efforts to date, and we look forward to working with you into the future to make the world a better place for the people living with multiple sclerosis.

17 August 2009

Les Misérables plays to a FULL HOUSE

There was no shortage of enthusiasm on stage at the Regal Theatre during the MS Society’s sixth annual fundraising musical - Les Misérables.

Les Misérables is one of the most inspiring and loved musicals, and follows the lives, interactions and struggles of a cast of characters over a twenty year period as they seek redemption and revolution in 19th century France. The musical is a dynamic and emotional demonstration of human spirit – so it is fitting that all proceeds from the production benefit people living with multiple sclerosis in Western Australia.

The collective of professional and amateur performers reveled in the opportunity to perform the Tony-award winning musical to full houses – almost 15,000 people.

Continuing the tradition of the MS musical, John Senczuk’s direction – concentrating on the lighter aspects of a dark tale, the sensational lighting, simplistic but effective sets and amazing cast, delivered a stellar production.

Accomplished musical director Tim Cunniffe and a fabulous live orchestra entertained and pleased audiences with songs such as "Castle On A Cloud", "I Dreamed a Dream", "One Day More", "A Heart Full of Love", "Stars", "Bring Him Home", "Do You Hear the People Sing?", and "On My Own".

This production would not have been possible without the support of our brilliant sponsors, and we extend a special thank you to United Community, 6PR, Channel 7, City of Subiaco and Community Newspaper Group.

Thanks also to the cast, creative and production teams, crew, orchestra and many volunteers who helped to make Les Misérables a wonderful experience for everyone who attended the show. Well done!

Last but certainly not least, congratulations to Natasha Birch, Michelle Mason and Sonia Sain at the Society for all your hard work behind the scenes. It takes an enormous effort to stage a musical production of this magnitude and you did an outstanding job.

Everyone involved with Les Misérables can be proud in the knowledge that this sell out season has raised a fantastic amount of money for the MS Society of WA.

30 July 2009

The MS Society of WA Contributes Record Funds For Research

As a result of another successful year and fantastic support from generous West Australians, the MS Society of WA is pleased to announce a record contribution has been made towards research.

In addition to general funding for MS Research Australia projects, this year the MS Society of WA has contributed an additional $190,000 towards three specific and very important research projects. These are:

Identification of the cells responsible for nerve sheath repair in multiple sclerosis 
This research will be conducted by Dr Alison Jennings from the University of Western Australia and Neurologist Professor William Carroll. In this study, MS affected optic nerve specimens will be analysed by staining the cells involved with repair of damaged nerve sheaths (remyelination) to find out why this process fails in later phases of MS. By understanding more about “remyelination failure” it is hoped that researchers can find a way to prevent it happening and therefore improve patient health outcomes.

How does pregnancy affect MS?
This research will be conducted by Dr Pamela McCombe from the Royal Brisbane and Women’s Hospital, Dr Judith Greer from the University of Queensland and Dr Robyn Wallace from the Queensland Brain Institute.
As a key project, this research hopes to assist understanding regarding how pregnancy ameliorates multiple sclerosis in some patients, but not others.

Cognitive, behavioural and social skills in childhood onset MS and childhood demyelination
This research will be conducted by Professor Vicki Anderson from the University of Melbourne, Assisting Professor Andrew Kornberg from the University of Melbourne and Assitant Professor Michael Ditchfield from the Royal Children’s Hospital.
Multiple sclerosis (MS) is largely an adult disease, with most research activity and clinical resources targeted towards aldults. The number of children diagnosed with MS, and other demyelinating conditions is steadily increasing, largely due to technological advances and increased awareness.Adults with MS commonly experience difficulties in cognition, behaviour and social functioning, however, little is known about how childhood MS affects these domains. This research will provide important contributions not only to our understanding of childhood MS but also adult MS.

Chief Executive Officer Marcus Stafford said “The research being conducted in Western Australia and elsewhere is of the highest quality and will hold the key to unlocking the mystery of MS. The MS Society of Western Australia is delighted to have been able to make an additional contribution to research, above our regular and ongoing commitment. This is a true team effort, made possible through the hard work of our staff and volunteers, and the support of our community.”

30 June 2009

Record Steppers For the third successive year, the people of Perth came out in their hundreds to support Enerflex Step Up for MS, braving a cool Sunday morning in June to climb 1,096 stairs and raise money for people living with MS in WA.

This unique fundraising event, which challenges people to run, walk, or crawl to the top of Perth’s tallest building, Central Park, once again broke all records for participant numbers, team registrations and money raised. Returning a net profit of over $140,000 with only 870 competitors is a phenomenal result and reflects Western Australia’s remarkable generosity and community spirit.

Special mention must be made to our highest fundraising teams - Ancestrais Capoeira and Fiona’s Flyers (led by CEO, Marcus Stafford) who together added almost $18,000 to the fundraising tally.

Congratulations also to this year’s winner – Neil Berry from UWA who completed the run in 6 minutes, 56 seconds.

This year’s sensational result could not have been achieved without the support of our naming sponsor, Enerflex; major sponsors, Central Park and 96fm; supporters, FAST, Wilson Parking, City of Perth and Worksite Fitness and Rehabilitation, as well as the hundreds of competitors who gathered donations from family, friends and colleagues to support their climb.

The 2009 Enerflex Step Up for MS was, without doubt, the best yet!

15 June 2009

Aussie researchers make double MS genetic discovery

Australian and New Zealand researchers have accelerated research into Multiple Sclerosis by discovering two new locations of genes which will help to unravel the causes of MS and other autoimmune disease. Their findings will be published today in the prestigious journal Nature Genetics.

“For decades the cause of MS has remained a mystery. This discovery reveals important new insights into the genetic susceptibility to the disease, “says Professor Trevor Kilpatrick, Director for Neurosciences at the University of Melbourne, who with Dr Justin Rubio of Florey Neurosciences Institutes coordinated the international study.

’The newly discovered gene regions, chromosomes 12 and 20, offer very promising targets which indicate susceptibility to MS,’ says Professor Kilpatrick.

“They also reveal information about genetic susceptibility to other autoimmune diseases including Type 1 diabetes, Rheumatoid Arthritis and Graves Disease and also potentially to Vitamin D metabolism.”

“These results are like the key in the door – leading us to where to look for MS susceptibility,” explains Professor Trevor Kilpatrick.

The research was conducted by members of the ANZgene consortium, more than 40 investigators from 11 institutions in Australia and New Zealand, and used the MS Research Australia (MSRA) Gene Bank. Two of the collaborating members of the team were Dr Bill Carroll and Professor Allan Kermode of the Sir Charles Gairdner Hospital in Perth Western Australia.

‘The two new genes add considerably to our knowledge of the mechanism of injury to brain and spinal cord in MS. And, they are likely to be good targets for treatment and possibly prevention of MS.

‘ANZgene study was made possible by a collaboration of leading MS clinicians and genetics researchers across Australia and New Zealand and by the enthusiastic participation of people with MS who contributed blood samples,’ Dr Carroll said..

‘ANZgene is also the first such large-scale human genetics project done completely in Australia and New Zealand. It’s a major advance in a number of ways for the Australian scientific community.’

Dr Carroll also said the study highlights the huge potential of genetics research for huge breakthroughs on causes of common diseases such as MS.

The three year study utilised the MS Research Australia (MSRA) Gene Bank and involved scanning the DNA of 1,618 people with MS and 3,413 people without MS (controls).

Using a genome-wide association scan (GWAS), researchers scanned the entire human genome in broad brushstrokes; looking at genetic landmarks in the genome and then progressively narrowing down their search to individual genes.

Dr Justin Rubio who coordinated the GWAS says these genetic discoveries are a major advance for the field. “We expect that within one - two years we will be able to fine map these new regions and identify the genetic changes that underpin these findings,” says Dr Rubio.

“Our next steps include studying how changes in these target genes might influence the development of MS. This work could provide insight into the development of novel therapeutics,” says Dr Rubio.

6 February 2009

Direct link between Sunlight, Vitamin D and MS Found

A new study has shown that vitamin D directly interacts with the single strongest gene known to increase the risk of developing Multiple Sclerosis (MS).

These findings support the connection between sunlight, vitamin D and genetic features of MS with major potential implications for prevention studies.

Dr Bill Carroll, Board Director at the MS Society of Western Australia and Scientific Chairman of MS Research Australia says “This is an exciting development that for the first time directly links vitamin D protective effect to the major MS susceptibility region of the human genome and has the potential to translate into a preventative measure that could help those at high risk of developing MS.”

MS is a common inflammatory disease of the brain that affects nearly 20,000 people in Australia and 2.5 million around the world. Three times as many women are affected than men.

Scientists at the University of Oxford found a ‘vitamin D response element or VDRE’ in a region of the genome known to increase the genetic risk of MS in the Northern Europeans 3-fold.

Vitamin D is primarily made in the skin while intake from food accounts for a small proportion. It is direct exposure to sunlight that converts vitamin D into its active form. The VDRE found in the region of a MS gene is the first time a direct link has been made between major environmental and genetic risk factors for MS.

So what is the mechanism that potentially leads to MS? It is plausible that a lack of vitamin D in utero or early childhood can affect the development of an individual’s immune system. For MS, in people with this specific VDRE, a lack of vitamin D during early life could allow aberrant immune cells to develop and increase the risk of developing an autoimmune disease like MS.

Dr Carroll emphasises “This is a most important finding for all involved with MS as it begins to draw together those genetic and environmental factors known and suspected to interact and cause this lifelong condition.” It may be possible to prevent MS through supplementation of vitamin D during critical periods such as in utero or early life.

What is clear is that MS is a complicated disease that is slowly being unravelled on the way towards prevention and a cure.

31 January 2009

Stemcells `reverse effects' of early MS

Cathy O'Leary - Medical Editor

Patients in the early stages of multiple sclerosis have had their condition reversed in a groundbreaking US trial which used their own stemcells to "reset" their immune systems.

In results published in the journal Lancet Neurology, doctors say it is the first time they have been able to actually reverse the autoimmune condition, using chemotherapy to wipe out a patient's immune system and then transplanting their own saved immune cells into their bodies to rebuild bone marrow MS causes the immune system to attack the central nervous system and can result in symptoms such as visual problems, fatigue, weakness or paralysis and lack of co-ordination.

In the trial of 21 patients aged 20 to 53, doctors were able to use stemcell transplants to stabilise and improve their symptoms and some patients saw their symptoms completely disappear.

Three years after treatment, 17 had improved, 16 had not experienced any relapse and none had deteriorated.

Experts said the treatment appeared to be a highly promising option for people with early stages of the condition in which symptoms came and went, known as relapsing-remitting MS, but it needed further study before it could be introduced into clinical practice.

Associate professor of immunology Richard Burt, of Northwestern University in Chicago, said it was important to try to reverse neurological damage in the early stages of the condition, before patients moved to a later stage known as secondary progressive MS which caused worsening and irreversible damage.

"This is the first time we have turned the tide on this disease," he said. "In MS the immune system is attacking your brain. After the procedure it doesn't do that anymore. "

Dr Burt said the results were promising and exciting but needed to be backed up by a random trial which had now been launched.

About 15,000 Australians have multiple sclerosis. Twice as many women as men develop it, with symptoms usually starting between the ages of 20 and 40.

- Courtesy of The West Australian Newspaper

28 October 2008

The recent, long awaited publication of the three year data from the CAMPATH 223 phase III trial (Alemtuzumab) has excited MS workers and people with MS around the world.

While this treatment is not without significant side effects, it appears that they can be managed appropriately and relatively safely. The trial data demonstrates that this medication, which dramatically reduces inflammation of the brain, can in most cases result in improvement or lessening of disability, providing it is introduced at an early stage of the disease. In relative terms, it appears to be more effective than the currently available medications. These current medications (Interferons and Glatiramer Acetate), which have very good safety profiles, have all recently been shown to be more effective than originally thought from their pivotal (initial) trials when given earlier in the disease course.

Alemtuzumab is currently being evaluated in phase III trials worldwide, and these will be completed in the next two to three years. If they also confirm the efficacy described in the recent publication, and do not show any unforeseen or severe adverse effects, it is likely that this medication will become the benchmark treatment for early relapsing and remitting MS.

Many other new and novel medications are on the horizon and in phase II trials.

It is an exciting time for people with MS and their carers.

Dr Bill Carroll

Neurologist and MS Society of WA Board Member