Multiple Sclerosis Societies

The Cooper Review into superannuation was recently commission by the Federal Government.

The report has made recommendations for a significant shake up of the superannuation industry, and some of these changes affect people with a disability.

Maurice Blackburn Lawyers has released an information kit about the review.  Click here to read it in full.

Two microRNAs (miRNAs) thought to regulate immune genes are found at lower levels in the blood of those with MS than in unaffected individuals.

Researchers found lower expression of two miRNAs — miR-17 and miR-20a — in individuals with relapsing-remitting, secondary-progressive and primary-progressive MS.

A decade-long study confirms the presence of multiple sclerosis-associated retrovirus in people with secondary-progressive MS.

Italian researchers recruited 39 untreated people with MS for a blind observational study in 1999.  Patients were tested for MS-associated retrovirus in their cerebral spinal fluid.

MSRV proteins may trigger an abnormal immune response, influencing the inflammatory processes characteristic in MS.  While the study has not demonstrated that MSRV causes MS, it could be a way of identifying potential worsening outcomes.

Source: MS Research Australia

MS Australia – QLD will hold free information sessions for people newly diagnosed with multiple sclerosis in Brisbane and on the Gold Coast next month.

The seminars, hosted by MS professionals, will cover a number of topics from new treatments and therapies to navigating the healthcare system.  This event would suit people who have recently received an MS diagnosis, and family or friends are welcome to attend.

Gold Coast session: September 7 from 6pm at Gold Coast Hospital.  Click here for details.
Brisbane session: September 8 from 5.30pm at MS Queensland's Services department.  Click here for details.

For more information, contact Tim O’Maley on 07 3840 0855.  Please RSVP by September 3.

MS Australia – QLD has published a statement regarding Chronic Cerebrospinal Venous Insufficiency (CCSVI).  MS Australia has recognised a need within the community to know more about Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) therapy.

MS Australia has been working with MSRA to assess and analyse the global data on CCSVI therapy and the progress of a clinical trial within Australia as part of a world-wide response.  You can view the full statement on CCSVI here.

Genes and other environmental factors are likely to influence MS susceptibility, according to a new study.

One of the environmental factors that has been implicated in MS and other autoimmune disease, such as type 1 diabetes, is vitamin D deficiency, in which patients have lower levels of vitamin D in blood than people without MS.

This study suggests that active vitamin D increases the suppressive function of regulatory immune cells. The MSRA-funded Australian and New Zealand Multiple Sclerosis Genetics Consortium (ANZgene) also published evidence to suggest that the region in which CYP27B1 sits is associated with MS susceptibility.

Both sets of results lend further to the role of vitamin D in MS.

Soure: MSRA

Debbie Smart was preparing to relocate to Lesotho, Africa, in June 2005 when she experienced sudden paralysis and loss of sensation from the neck down. This was found to be the result of a neurological lesion and she was diagnosed with multiple sclerosis.

Her plans of moving to the tiny nation of Lesotho in the continent’s south to work with her husband in aid and development hung in the balance. Undeterred by her diagnosis, Debbie continued planning.

The winter issue of our quarterly magazine MS Life is out now, jam packed full of news and information for people with MS, their families and carers.

 You can download a PDF version from our website.

The Department of Communities – Disability and Community Care Services will host a series of forums across Queensland to seek feedback on a 10 year support plan.

Through the 2010 Shared Visions regional forums, members of the community can give their opinion on the draft Plan for Supporting Queenslanders with a Disability.

Click here to see a list of forum dates and locations.

MS Queensland has launched a discussion forum on Facebook for people with MS and their friends, families and carers.  If you have not already, join our fan page and start participating in the conversation. 

You can ask questions, share information and meet people from around the state.  Join a current discussion or start your own topic.

Click here to visit the Facebook fan page, and then click on the "Discussions" tab.

Alemtuzumab, an IV treatment for relapsing-remitting MS, is poised for an expedited FDA review when the current Phase III trial is completed.

The FDA's Fast Track program is designed to expedite the review of new drugs that are intended to treat serious or life-threatening conditions and demonstrate the potential to address unmet medical needs.

Alemtuzumab, also known as Campath and originally developed to fight cancer, could help people with MS during the early stages of the disease.

A Phase II trial has shown that Alemtuzumab reduces the risk of relapse and accumulation of disability by over 70% compared with interferon beta in patients with early relapsing-remitting MS.

Source: Genzyme

Worklife is a website for people with long-term health conditions who want to stay in work, for their employers and for health professionals.

Dr Dhia Chandraratna, Head of International Research at Multiple Sclerosis International Federation (MSIF), says, "Worklife should prove a useful resource for people with MS, their employers, and for MS societies and health professionals.

"While the information on rights, benefits, and the law are specific to the UK, much of the information is relevant to anyone dealing with a fluctuating chronic health condition, wherever they live."

Fatigue is common in neurological conditions. It is a troublesome symptom that is frequently misunderstood by family and friends because it is not obvious. For some people it limits social and work activities, and can impact on lifestyles on a daily basis.

Changing lifestyle and behaviours is one way to help. We call this ‘fatigue self-management’.

MS Australia – QLD will conduct a six-week course designed for people with multiple sclerosis and others who have fatigue as a symptom secondary to a neurological condition.

Differences in the sequence of a single gene may be partly responsible for causing around two per cent of relatively common autoimmune disorders, including multiple sclerosis and diabetes.

The gene codes for an enzyme called sialic acid acetylesterase (SIAE) that regulates the immune system's B cells — the cells responsible for producing antibodies against foreign invaders.

The role of the self-help network People with Multiple Sclerosis Queensland (PwMSQ) has changed over the past 25 years, but its relevance and importance remains undiminished.  

The PwMSQ network now focuses on its social support role – the role that can’t be emulated unless one has MS.

This is then a unique function and the Society wishes to support and strengthen the group network. But we need help from within PwMSQ – leadership, direction and coordination to truly make the group a reflection of what is important.

We want to support someone who is able to commit to the role of Chairman of PwMSQ for a limited term. Come in, make a contribution and hand over the baton after a couple of years. If you are interested in putting yourself forward, please contact the Director of Services for more information.

Gold Coast Titans star Brad Meyers has lent his support to people with multiple sclerosis, including his sister Michelle.  At his suggestion, the Titans made MS Queensland a beneficiary of their recent charity ball. 

This video was played on the night, featuring Brad at home with his family as well as MS Queensland chief executive officer Trevor Farrell.

Thousands of families, corporate teams and even a man in a tutu descended on South Brisbane on Sunday morning for the annual Enerflex MS Brissie to the Bay charity bike ride. 

 Cyclists of all ages and backgrounds, and more than a few colourful characters, rode one of three distances – the 10km, 25km or 50km routes – to support Queenslanders living with multiple sclerosis.

MS Research Australia chairman Simon McKeon has been appointed as Chairman of the CSIRO, it has been announced.

Since its formation in early 2004, Mr McKeon has led the MSRA Board and been instrumental in helping the organisation grow and develop a national collaboration in multiple sclerosis research.

He will stand down from his role with MSRA in due course, after a selection process for his successor.

Some of the most respected international MS researchers have joined with MS Societies from around the world to produce a paper on the future of stem cell transplantation research.

The new guidelines, published following an international consensus meeting in London in May 2009, spell out the hope for the future of MS stem cell research.

The Governor of Queensland, Her Excellency Ms Penelope Wensley, hosted a World MS Day reception at Government House on May 25.  At this special event, Ms Wensley delivered a moving speech about the issues facing people with MS – particularly employment.

A transcript of her address has been uploaded.  You can read the full speech here.