Our new look website is on its way very soon. 

In an effort to provide you with an improved source of information about our activities, our website is currently undergoing redevelopment.

We apologise for any inconvenience -please bear with us while we complete this important upgrade.

GETTING IN TOUCH 2009 –WE NEED YOUR HELP!

Thousands of Tasmanians suffer from debilitating and sometimes life threatening, neurological conditions.  These include Multiple Sclerosis (of which Tasmania has the highest incidence in Australia, Motor Neurone, Parkinson’s, Spina Bifida and Huntington’s Disease.  However, we have no full picture of exactly how many Tasmanians suffer such neurological conditions and who they are.  The Neuro Muscular Alliance of Tasmania (NMAT) in conjunction with IMC-Link are conducting a survey to gather more detailed information about these conditions in order to develop a body of data that will influence future planning and provide empirical evidence for advocacy on behalf of people living with neuromuscular conditions in Tasmania. To make this survey successful, we need as much information as possible.  Your help in encouraging patients with a neuromuscular condition to complete a survey would be greatly appreciated.

Officially launched on 30th November, “Getting in Touch” will be to first comprehensive survey of this type ever conducted and will provide wide ranging information on who is affected (how many people and their demographic profile); how they are affected (the extent of debilitation) and what their needs are (Current support services, identification of gaps in services).

The collective information will support relevant associations to understand client needs and align their strategies and/or use the data to lobby government for improvement of client services.

The survey is completely confidential and impartial – once completed, all survey forms are sent to an independent organization for collation.

Copies of the survey are available from participating organisations on the numbers listed below, or on the IMC-Link website at www.imc-link.com.au.  If you are a registered client or member of one of the following organisations, you will be sent a copy of the survey.

• Australian Huntington’s Disease Association (Tasmania) Inc - Ph: (03) 6431 3403
• Muscular Dystrophy Tasmania – Ph: (03) 6231 3273
• Motor Neurone Disease Association of Tasmania – Ph: 1800 806 632
• Multiple Sclerosis Society of Tasmania (03) 6220 1111 (South) or (03) 6343 1240 (North)
• Parkinson’s Tasmania (03) 6295 1395 or (03) 6375 1734
• Spina Bifida Association of Tasmania Inc (03) 6275 0987IMC-Link

ACTIVITIES FOR KIDS - MyState, MySport Project

With sponsorship from the MyState Financial Foundation MyState, MySports aims to provide opportunities for children who are from families with MS to participate in community based sport clinics and camps, rosters, courses, visual and performing arts activities.  It is about supporting children who would otherwise not have this opportunity as a consequence of their association with MS.

Read more – conditions and application form

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.

MS Society of Tasmania Annual Report 2008/09

A full review of the operations of the Society for the year ended 30 June, 2009 ... Read more

Ausimmune Study - Progress Report January 2007

MS occurence has increased over time in many locations, including parts of Australia.  In Australia, incidence of MS and Type 1 Diabetes varies by latitude, which likely reflects environmental factors. 

The Ausimmune Study aims to assess the incidence of MS in various locations around Australia and assess whether:

• Increasing latitude coincides with increasing first demyelinating episode (FDE) in Australia during 2003 - 2006.
  
• FDE occurrence is associated with environmental factors.
  
• Lifestyle and environmental factors influence disease progression.
  

Click here to see the most recent progress report.

Menzies Research Institute

Information on Vitamin D levels for people with Multiple Sclerosis...

Read more

Wheelies House Swap

A New Website For People Who Use Wheelchairs

wheelies.net.au is a new website which has been released to enable people who use wheelchairs to meet, talk and swap houses which they know are suitable for their holidays.

wheelies.net.au provides a free community service for people who find it difficult to have holidays because of cost or lack of suitable accommodation

The brainchild of Sharon Lennox and with help from Harry Wilsdon who are both living with multiple sclerosis wheelies.net.au is proudly sponsored by the MS Society of Tasmania; gifted by the Tasmanian Community Fund; and made by Ionata Web Solutions...Read More