As usual on the first Saturday of MS awareness month, May 2nd, we held our annual conference at the MS Nerve Centre. Some 75 people attended and the conference was videoed and shown live on the internet and we had four excellent speakers. The first was Matthew Miles (CEO of MS Research Australia) who spoke about MS research in Australia and overseas; Matthew pointed out how lucky we are in Australia that there are 11 effective and relatively safe drug options for relapsing remitting MS listed on the PBS and 4 or 5 other drugs in the pipeline, but he acknowledged that there are as yet no effective drugs for either primary or secondary Progressive MS. However, he said the recently established Progressive MS Alliance is good news, and the Alliance has now awarded its second round of grants bringing to $30M the total amount of new money allocated to Progressive MS research.
The next speaker was Olga Skibina (Neurologist) who spoke about Current and new MS treatments. Olga spoke about the experienced gained with the new drugs (Gilenya, Tecfidera, Teriflunomide, Lemtrada and Tysabri) all listed on the PBS since 2011. She then spoke about the problem of people changing drugs frequently and indicated statistics show that those who persisted tended to benefit as a consequence. Olga then described how the MS-treatment landscape is changing with increased attention being paid to symptom treatment – tremor, walking and bladder function. Olga closed with comments about the significance vitamin D and vitamin B7, new work on stem-cell therapy and exciting research into the potential for remylenation.
The third speaker was Eric Drummond (co-founder of MStranslate) he spoke about why they had established MStranslate to provide independent online information about MS using accessible language. Our final and most inspirational speaker was Trish Mifsud (Co-ordinator of the MS Ambassador program) who gave a moving description of her journey through MS, how she and her husband sold assets to enable her pay for medication and her role in getting the first MS medication on to the PBS. Finally Trish described the establishment and operation of the Ambassador Program whose members, all people with MS, go out and speak in the community to increase knowledge about MS and support for MS research. Over the 15 years since its inception Ambassadors have given over 2,600 presentations to more than 2.5 million listeners!
Video recordings of all the presentations at the Conference can be accessed via the PwMS website www.pwms-v.org.au and are already attracting a great many viewers.
Some of you may have noticed a recent news item about the theft of a mobility scooter; so let me ask “Do you use a mobility scooter or a power-wheelchair?” and if so “Is it insured?” If you have not insured your scooter or wheelchair then perhaps you should consider doing so; how would you replace it if it was stolen or badly damaged? You can probably get it insured under your household contents insurance (if you have one); alternatively there are companies such as “Premier Care” or “Blue Badge” who offer specific policies covering scooters and wheelchairs.
I hope the coming winter treats you kindly and I encourage you to have a look at the Conference recordings.