MS AUSTRALIA | ACT/NSW/VIC | QLD | SA & NT | TAS | WA | MS RESEARCH  

Latest News

MS Advisory Councils Seeking Your Voice

MS Advisory Councils ensure that people with MS continue to have their voices heard within Australia’s peak representative organisation.

The MS Advisory Council is an independent body representing people with MS and is a direct voice to MS Australia’s Senior Management and the Board. In March 2008, the Councils began working to a new charter and have been working on a number of new initiatives including the development of operating guidelines.

We currently have Councils operating in Victoria and New South Wales with a similar group operating in the ACT. The MS Advisory Councils advise the Board and Management on a range of MS-related issues affecting people living with MS in the ACT, NSW and VIC.

The Advisory Council’s are keen to hear from people who would like to contribute to any matters being discussed by the Councils. If you are interested in joining or attending a meeting as a guest please contact the Advisory Council at advisorycommittee@mssociety.com.au.

TYSABRI ALERT - from the MS Australia medical spokesperson, Dr. W. M. Carroll [1 August 2008]

This morning MSA was advised that two patients with MS, overseas, have been diagnosed with PML (progressive multifocal leucoencephalopathy) while on Tysabri (Natalizumab).

Details are not complete but one patient with aggressive MS developed the condition after 17 infusions having had no other treatment. The second had previously received Azathioprine and an immunomodulatory therapy.

Both were detected by the post marketing surveillance system set up for Europe and similar to the TAPP programme in Australia. With the cessation of Tysabri treatment and the use of plasma exchange the condition has been halted and the patients are now stable.

Biogen-Idec have advised the TGA of the development and said that it highlights the need for continuing vigilance by MS practitioners and immunotherapy nurses. Further information will be posted as it becomes available.

W M CARROLL
Chair MSRA Research Management Council

If you have any concerns please contact your Neurologist.

Call for Nominations - MSA John Studdy Award 2008

Nominations have now opened for the 2008 MSA John Studdy Award.

The John Studdy Award is the Society’s most prestigious Award, given annually to an individual, in recognition of outstanding consistent and selfless provision of meritorious service to people with MS, at either National or State level, preferable over a period in excess of ten years or other factors in the consideration of the committee. The standard of the service is such that "the individual has made, or is making, a tangible difference" for the benefit of people with MS and/or their families.

Please note we encourage nominations from all areas including exceptional fund raisers or donors.

Should you wish to submit a nomination, please download and complete the nomination form and send to: along@mssociety.com.au no later than 31st August 2008.

Download John Studdy Award Criteria
Download John Studdy Award Nomination Form

MSL Membership - 2008/2009

Annual memberships (for the financial year 2008/2009) are now due. We cordially invite you to join Multiple Sclerosis Limited. Download the application form here.

MS Society of the ACT joins MSL

Today, the MS Society of the ACT and the MS Society of NSW/VIC will merge and operate as one organisation,
MS Australia – ACT/NSW/VIC. It is hoped the merge will result in improved services to people living with Multiple Sclerosis (MS) in South East NSW and the ACT through access to broader skills and additional resources...
Read more

National Health and Hospitals Reform Commission Submission & Hearings

The MSA Policy Team put in a submission to the National Health and Hospitals Reform Commission on 30 May 2008, see the links below. Additionally, the Commission is holding hearings throughout Australia in June and July. If you are interested in attending and testifying at one of the hearings, please contact the policy team via Alan Blackwood. Dates for the hearings and other information about the Commission can be found on their website: www.nhhrc.org.au

MSA Submission to NHHRC: Read more 
Continuous Care Model: Read more 

Federal Parliamentary inquiry - Better Support for Carers. Submissions due 4th July

A new Inquiry has been announced by the House of Representatives Committee on Family, Community, Housing and Youth looking at the system of carer support in Australia. The inquiry is focusing on social and economic participation and the practical measures need to better support carers in their role. The MS Society will make a submission, however this is a great opportunity for carers and families to tell the inquiry their own ideas for improvements that come from direct experience of caring for a person with MS. Read the Inquiry Media release

We have prepared a brief guide for families wanting to make a submitting to the inquiry. Read more 

National Advocates Program

The program is part of the existing MS Australia Policy and Advocacy program, and will engage a number of volunteer advocates who live with MS in each State and Territory who will take part in the policy development, network and campaign activity of the Policy team across all levels of Government to help ensure that public policies are supportive of the needs of People with MS & their families. Read more 

Call for applications: Would you like to be a National Volunteer Advocate?

For further information email Robert Pask rpask@mssociety.com.au

Notice of a general meeting for members of Multiple Sclerosis Limited (MSL) Friday June 20 at 5.30pm

Location: The Nerve Centre, 54 Railway Road, Blackburn, Victoria and Video Link to The Studdy MS Centre Joseph Street Lidcombe, NSW 2141

The Board is proposing changes to the MSL constitution and requests that all members take the time to read these documents and lodge their vote.

Documents attached:

Letter from Chairman 
Notice of a general meeting and explanatory Notes  
Proxy Form 
Proposed New Constitution  

MS Australia Welcomes Assistance For Carers and Listing of New Drug in Budget

MS Australia (MSA) today said it was encouraged by the Rudd Government's first Budget last night.

The Budget included the re-announcement of the listing of the drug Tysabri on the Pharmaceutical Benefits Scheme (PBS), which will take effect from July 1. Read more. 

MS Awareness Week

MS Awareness Week is happening from Sunday 1st June to Saturday 7th June 2008. To get involved or find out more head to the MS Awareness Week website.

MS Australia Thanks Federal Government For PBS Listing

MS Australia is pleased to learn that the Federal Government has committed to subsidise the MS treatment, Tysabri, on the Pharmaceutical Benefits Scheme (PBS) as of 1 July, 2008. Read more. 

MS Brain Bank - Putting the best brains to MS research

Australia's first MS Brain Bank is underway for People with MS to bequeath their tissue for MS research. The facility will coordinate the collection and use of brain and other neural tissue for MS research that will increase our understanding of the disease. The ultimate goal of MS neurobiology research is to understand the biological mechanisms causing MS to develop a cure...
Read more.

Researchers report that stopping Tysabri increased MRI-detected disease activity in some patients

MSA is awaiting confirmation of this observation at this time. If you are on Natalizumab, and it is to be ceased for a period longer than 3 months you should discuss it with you treating neurologist... Read more. 

MSL Annual Corporate Membership 2007-2008

We invite you to become a member of Multiple Sclerosis Limited... Read more.