Nigel presidents letter             Dear Readers

At last some really good news about research into the treatment of progressive MS. This was reported by Professor Helmut Butzkueven at the recent public lecture on “Progress in MS” held by MS Research Australia. He said that several drugs currently undergoing trials offered real hope for sufferers of progressive MS.  He mentioned the four drugs below; and more information on each may be found at the MS Research Australia site www.msra.org.au, from which this information is taken.

Ocrelizumab: Genentech, a biotechnology company owned by Roche Pharmaceuticals, has announced promising results from a phase III clinicaltrial of experimental therapy Ocrelizumab in people with primary progressive MS.

Biotin: French researchers, sponsored by the manufacturers of vitamin compound Biotin,havereportedpromising early results from a phase III trial of high-dose Biotin (MD-1003, also known as vitamin B7) for delaying or preventing disease progression, in people with secondary progressive MS. (It is important to note that this is a highly concentrated, pharmaceutical formulation of Biotin that is being tested and is very different to the over-the-counter vitamin B supplements available.)

Anti-LINGO: Ongoing work from an international collaboration of researchers, including several in Australia, is showing encouraging results from phase II trials of anti-LINGO; early results have shown that anti-LINGO may protect against nerve damage in people with acute optic neuritis, and also holds promise for other demyelinating diseases.

Ibudilast: This is an anti-inflammatory drug, mainly used in Japan to control asthma. It blocks the action of a group of enzymes … and can dampen the activity of … the resident inflammatory cells of the brain, which have been implicated in the ongoing damage in progressive MS. It has been shown to reduce damage in animal models of MS and in an earlier trial in people with MS.

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Do you have Ambulance Cover? I hope you do.  If you are a pensioner or a Centrelink card holder you receive a level of cover as a result. However, the cover you receive as a pensioner or a Centrelink card holder is limited. It will cover your transport to the nearest and most appropriate hospital.  But it does not cover being transported from a private healthcare facility or being repatriated or relocated to/from Victoria for non-clinical reasons (e.g. for their own or their family’s convenience); repatriation back to Victoria must be authorised as clinically necessary and there must be a demonstrated clinical requirement for ambulance transport. The simplest way to avoid ambulance costs is to subscribe to Ambulance Victoria currently only $43.80 per person or $87.60 per family annually.

We all want to stay living in our homes doing as many of our day-to-day tasks as possible.  There are more and more devices available to help us achieve this but it can be difficult to find about the latest gadgets such as simple things which could help us open jars or bottles or doors for example. A good place to find out about equipment which might help you around the home is Independent Living Centres Australia which has at least 3 centres around Melbourne; (phone 1300 885 886, or website www.independenceaustralia.com.

The keynote speaker at the recent PwMS seminar (The Nerve Centre, Blackburn, Nov 12th) was Sharon Strugnel, CEO of BrainLink Services, who spoke about why carers are so important, how best to support them, and why emergency planning by carers is important. Sharon’s talk was very interesting, informative and timely.  Whether you are a carer for someone else or for yourself, hot summer weather is now with us so please make sure you have an emergency plan in place for power cuts, fires, severe storms and anything else that may disrupt your regime and your health.

Very best wishes for the festive season, I hope you don’t have to implement your emergency plan and I hope the new year brings you good luck.

Nigel Caswell

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