MS - ACT/NSW/VIC

Vale Zanna Baron

The MS community lost a treasured friend recently in Zanna Baron.

Zanna gave many years to MS Australia’s efforts in NSW, and in fact her involvement dated back to the establishment of MS Australia in 1956. She was the President of the NSW Council of People with MS, National President of People with MS and gave many years of service on the Board of the MS Society of NSW.

Zanna was the founder of the first quarterly newsletter for people with MS – Magscene – and is remembered fondly for her contributions in ‘Zanna’s corner.’ She was awarded the prestigious John Studdy Award in 2001.

The Multiple Sclerosis International Federation recognised Zanna with the renowned International Person with MS Award, but people with MS, staff of MS Australia and all people involved in the MS community will remember her most for her warm personality and tireless commitment to helping advocate for people living with the disease.

Fact Sheet: Stem Cell Treatments in MS (May 2010)

On Tuesday 17 May 2010, The 7:30 Report (ABC) ran a story about two people with MS who had received stem cell treatment. Read more about the story and MS Australia – ACT/NSW/VIC’s response.

Download Stem cell treatments in MS fact sheet.
See also Recent reports regarding stem cell treatment.
To view the coverage of the 7:30 Report or obtain a transcript of the interview, click here.
Visit the MS Research Australia website for more on the latest on stem cell research.

Response to Recent Questions from Clients about
Chronic Cerebrospinal Venous Insufficiency (CCSVI) Therapy

MS Australia ACT/NSW/VIC is a client support organisation. Our primary objective is to provide assistance and support to help make life easier for people living with MS. We recognise the important role that research plays as part of this. Our research is conducted through a connected but independent organisation called MS Research Australia (MSRA).

MS Australia ACT/NSW/VIC recently recognised a need within the community to know more about Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) therapy.

MS Australia ACT/NSW/VIC has been working with MSRA to assess and analyse the global data on CCSVI therapy and the progress of a clinical trial within Australia.

MS Australia ACT/NSW/VIC continues to support new treatments, which may improve outcomes for people living with MS while understanding that before any treatment can be recommended it should be subject to rigorous scientific testing and review.

MS Australia ACT/NSW/VIC intends to work with leading expert neurologists, vascular surgeons, radiologists, other medical professionals, MSRA and the CCSVI community group to find out more and communicate findings about CCSVI.

MS Australia ACT/NSW/VIC does not recommend that people living with MS seek CCSVI treatment outside controlled tests. However, as with all forms of treatment*, it is a matter to be discussed on an individual basis between the patient and their specialist.

If CCSVI treatment is being considered it’s important to note:

There have been documented complications with the use of stents. MS Australia strongly recommend against the use of stents during CCSVI therapy for MS
Receiving CCSVI therapy as part of a controlled trial is recommended as it will contribute to the research being conducted into the treatment
It is recommended that procedures be performed in Australian hospitals where ongoing care can be provided
People living with MS should communicate with their doctor, neurologist and family members before deciding to undergo CCSVI treatment

*MS Australia ACT/NSW/VIC cannot recommend any specific disease treatments for people living with MS. The choice of therapy to treat the disease is a matter to be discussed with a specialist healthcare professional.

Any media enquiries should be directed to:

Prue Guillaume
0427 139 078

CCSVI Your Questions Answered

Click here to read.

NSW Medical Energy Rebate Increase

The NSW Medical Energy Rebate is currently $130 a year, and is increasing to $145 a year from 1 July 2010. This Rebate will further increase to $161 per year from 1 July 2011. If you have MS and are on a pension or have a healthcare card you may be eligible.

For more information see the NSW’s Dept of Industry and Investment website at www.industry.nsw.gov.au or contact MS Connect on 1800 042 138.

Introducing the Betty Cuthbert rose

Four-time Olympic gold medallist Betty Cuthbert has been honoured for dedicating nearly forty years to championing the needs of people living with multiple sclerosis (MS) through the naming of a rose by famed rose grower, Treloar Roses. Labelled the ‘golden girl’ of Australian athletics after setting two world records at the 1956 Olympic Games in Melbourne, Cuthbert now aged 70 was diagnosed with MS in her late thirties and since her diagnosis has devoted a vast amount of her time and energy to raising awareness about the disease.

Treloar Roses will donate a $1.00 from the sale of each rose to MS Australia. The rose will retail for $18.00 each.

Click here for more information

$1.4 million announced to support MS research

MS Australia today welcomed the announcement by the NSW Government and Multiple Sclerosis Research Australia of $1.4 million in funding and a new network to help researchers unlock the mystery of Multiple Sclerosis.

The NSW Minister for Science and Medical Research, Jodi McKay MP today announced $270,000 to assist in setting up the NSW Multiple Sclerosis (MS) Research and Clinical Trials Network.

The Network will bring the State’s top researchers together and streamline the clinical trials process. The funds will support a Multiple Sclerosis Clinical Trials Coordinator and provide secretariat and grant writing support.

MSRA also announced the investment of $970,000 to support two new fellowships to continue the promising research already occurring in genetics and neuropathology.

This follows the recent identification of the second gene involved in multiple sclerosis.

In 2009, MS Australia - ACT/NSW/VIC contributed $2.211 million to MSRA, making MS Australia the largest single funder of MS Research in Australia through MSRA.

For more details on this exciting announcement go to www.msra.org.au

For further information or media enquiries please contact:

Prue Guillaume
MS Australia – ACT/NSW/VIC
Ph: (02) 9646 0633
Mob: 0437 139 078
Email: prue.guillaume@msaustralia.org.au

Statement re: CCSVI research

Chronic cerebrospinal venous insufficiency (CCSVI) is a condition in which the cervical and thorac veins are not able to remove the blood from the central nervous system. In 2009, Dr Paolo Zamboni reported that this condition may have an association to Multiple Sclerosis.

MS Australia welcomes any research into the cause and cure of MS, and awaits more research findings into this condition to determine its link to Multiple Sclerosis.

For more detailed information, visit the MS Research Australia's website at www.msra.org.au.

People with MS with any questions should contact MS Connect on 1800 042 138 or their treating neurologist.

Media enquiries should be directed to Prue Guillaume on 0437 139 078.

Media Release: Multiple Sclerosis Advocate Receives Australia Day Honour

Leaders from the multiple sclerosis movement have today congratulated Graham Tribe for being appointed a Member of the Order of Australia (AM) in recognition of his tireless commitment to Australians living with
multiple sclerosis (MS).

Read the full media release here.

Media Statement Re: Fingolimod and Cladribine 21 January 2010

Reports in the New England Journal of Medicine today (21 January 2010) indicate that clinical trials of the drugs Fingolimod and Cladribine show favourable results for treating the symptoms of multiple sclerosis (MS). Fingolimod and Cladribine are pharmaceutical medications for relapsing-remitting MS and would be taken as capsules, as opposed to most currently available treatments, which are administered by injection.

MS Australia welcomes research into any new therapies which may give people living with MS more options for the reduction in disease activity and the strong possibility of less long term disability.

However, despite the exciting phase III trial data reported today these drugs are still at clinical trial stage and are yet to go through the required Therapeutic Goods Administration (TGA) assessment and other approval processes for use in Australia.

We are looking forward to the results of these assessments by the regulatory authorities in Australia to determine when these drugs will be available to help people with MS in Australia.

People living with MS who require further information about this subject should contact
MS Connect on 1800 042 138 for more information.

For all media enquiries please contact Prue Guillaume on 0437 139 078 or Kate McEvoy on 0424 649 148.

Media Statement Re: Sativex - Friday 15 January 2010

Several media reports today (Friday 15 January 2010) indicate that doctors at the Royal Melbourne Hospital are aiming to test the drug Sativex for treatment of the symptoms of multiple sclerosis (MS). Sativex is a pharmaceutical medication derived from cannabis.

MS Australia welcomes research into any new therapies which may help people living with MS manage the symptoms of the disease.

However while the drug has been approved in other countries it is yet to go through the essential Therapeutic Goods Administration approval process in Australia.

We are looking forward to the results of this rigorous testing to determine whether this drug will be effective in helping people living with this disease.

It must be noted that this form of treatment is only symptomatic and will not slow or affect the course of MS. At best it will improve the quality of life for those with appropriate symptoms such as painful stiffness of muscles etc and will not replace but only supplement physical and other existing therapies.

People living with MS who require further information about this subject should contact
MS Connect on 1800 042 138 for more information.

For all media enquiries please contact Prue Guillaume on 0437 139 078 or Kate McEvoy on 0424 649 148.

Recent reports regarding stem cell treatment

Media outlets in a few states and territories over the past few days have reported on a Canberra teenager with multiple sclerosis (MS), who has shown positive signs of improvement after receiving stem cell treatment. Ben Leahy is 19 years old and was diagnosed with the disease in 2008.

While this is great news for the young man involved, there is no clinical evidence to lead us to endorse this treatment as being useful in all cases. While it has the potential to be a promising area, much more research is needed to
be done.

Professor Bill Carroll, MS Research Australia’s Scientific Chairman says "With changes in the way bone marrow stem cell transplants are performed nowadays the risk of death from this treatment has fallen. When this is combined with transplantation at a relatively early stage of aggressive disease the risk-benefit relationship has been improved considerably."

"At present this is not a treatment option to be considered for all people with MS. There is an increasing amount of research interest worldwide in this form of treatment".

People with MS are encouraged to always seek the advice directly from their treating neurologist about their
own disease.

NSW Medical Energy Rebate

The NSW Medical Energy Rebate was launched by the NSW Government in October 2009 and will take effect on 1 January 2010. It is a $130 annual rebate for people living in NSW who are on low incomes and who suffer from heat intolerance and/or cold intolerance. .
Read more.

MS Australia welcomes the announcement of a study into a long term care and support scheme

MS Australia has welcomed the Prime Minister’s announcement of a new feasibility study to assess approaches for funding and delivering long-term disability care and support, including the possibility of a social insurance scheme.
Read more.

Companion Card Scheme

A new National Website has recently been launched detailing the operation of the Companion Card scheme. A companion card allows 2 people to attend an participating event or use a service where one person is a cardholder, has a disability and requires a companion to access the community. The website details eligibility, participating businesses and application requirements.
Read more.

Channel 31 Melbourne to air The MS Show

Channel 31 in Melbourne will air a repeat of The MS Show from September 13 (Sundays at 7.30PM). For information on how to tune in, please visit the Channel 31 website: www.c31.org.au

Intouch Now Available in Text-Only Format

The latest edition of Intouch should be arriving in your mailbox shortly, and is now available online.

The magazine is now also available in a text-only format, which has been developed especially for clients who may have difficulties reading the hard copy magazine.

Please contact the editor on (02) 9646 0725 or email intouch@msaustralia.org.au to be emailed a copy of the text-only version.

Impact of MS on Caring Relations Project

Back in 2002, Beatrice Zuluaga conducted a research study designed to better understand the impact of MS on the lives of those living with MS and the lives of others affected by MS. She called upon participants to take part in the study which consisted of in depth conversations with 12 pairs (a person with MS and their identified main carer).

She has recently completed her study titled: Impact of Multiple Sclerosis on committed caring relationships: the experience of twelve spousal carepartners dealing with this “uninvited guest” and would like to thank those who participated in her research study.

To read her thank you letter, please click here

To read the original letter calling for participants, please click here

MS Australia's response to the federal budget announcement

Response to federal budget

Australian first - University of Sydney Professor wins prestigious MS Award

The winner of MSIF's biennial Charcot Award is Prof John Prineas, from the University of Sydney, Australia.

Prof Prineas was selected from an outstanding field of candidates by an international panel of experts from MSIF's International Medical and Scientific Board, chaired by Professor Alan Thompson.

"The Charcot award recognises a life-time contribution to the world of MS and there could be no more deserving recipient. John Prineas has made a unique contribution to our understanding of the pathology of multiple sclerosis - over a number of decades, collaborating with colleagues on a truly global scale." Prof Alan Thompson, Chairman, MSIF International Medical and Scientific Board.

New Case of Brain Illness in Tysabri Patient

Another Tysabri patient has contracted progressive multifocal leukoencephalopathy, or PML, a recognised rare complication of Tysabri treatment.

Click here to read the full article.

Alemtuzumab (Campath) in the news

Recently, news of a new drug being trialled, known as Alemtuzumab or Campath, featured on various TV and Radio programs.

MS Australia welcomes any potential new drug that could give hope to people with MS. Different people respond to drugs in different ways, and this drug is still being trialled, so we have limited information on it at this stage. We look forward to the results of the trial to determine whether it can be used safely and effectively for people with MS.

For more background information on the drug and the results of overseas trials, please click on the link below:

www.nationalmssociety.org

Better Support for Carers - Federal Parliamentary Inquiry

MS Australia has made a submission to the House of Representatives inquiry into Better Support for Carers, and gave evidence at the Melbourne Hearing of the Inquiry. We highlighted the need for increased workplace flexibility for carers, improved superannuation provisions and a disability insurance scheme to fully fund disability services. Read the submission here.

Predictors of subjective fatigue in 3 samples: chronic fatigue & MS patients and university student controls
Investigators: Rhonda Brown, PhD.; Einar B. Thorsteinsson, PhD. University of New England NSW Australia

MS Australia- ACT/NSW/VIC would like to invite you to participate in an on line research project being conducted by the University of New England, NSW, Australia which aims to better understand fatigue. The purpose of this study is to investigate the relationship between fatigue, stress, anxiety, depression, viral infection symptoms, sleep disturbance, and a number of specific stressors, unhealthy behaviours, psychosocial factors, and cognitions. Fatigue often has a physiological basis (e.g. viral infection), but previous research has shown that fatigue also has psychological aspects. This research is intended to help us better understand the way in which psychological factors impact on fatigue over a period of time. If you decide you would like to participate in the study, you will be asked to complete set of on line questionnaires three times (i.e., now, 6 months from now, and then 12 months from now).

http://www.surveymonkey.com/s.aspx?sm=sAu4Ep2exYGsdAW_2bc6UQMg_3d_3d

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@msaustralia.org.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.

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

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.

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