I’m delighted to be providing a guest blog post to the MS Australia CEO Blog and I’m even more delighted to be doing so as the new National Advocates Coordinator of MS Australia.
Securing this position is certainly one of my proudest moments both privately and professionally.
My family, friends and I are very close to ‘celebrating’ 25 years since my MS diagnosis…..13 September to be precise. I will no doubt cherish this day and all that has come before us because the past 25 years have certainly presented their fair share of challenges and a variety of symptoms ranging in severity.
Still, I continue to be wide-eyed, bushy-tailed and have a smile on my face.
I am privileged to be the Coordinator of a great group of folk throughout this country all living as I do, making the best of their life with MS and giving it our best shot to be effective and efficient advocates.
It’s been a little over two months in the role as National Advocates Coordinator at MS Australia so it’s probably a good time to take stock, to reflect on the position, what it means to me and to outline where we hope to take the MS Australia advocacy program in the future.
Source: Burnie Advocate
Joining MS Australia
My journey with MS Australia started long before my appointment as the National Advocates Coordinator.
It was in 2008 that I was invited by the then CEO of MS Tasmania to consider being an advocate to MS Australia. I was no stranger to the media at the time, my family and I had featured in several stories about living with MS in Tasmania, particularly what it was like to be a young person with MS (as I was back then!) and I’d also worked in sales and done some radio promotions in a past life.
I would regularly speak on issues like employment, parenthood, World MS Day and MS Tasmania services and events. I had also been a long term member of the local MS support group so it’s fair to say I was well versed in discussing MS and probably suited to the role. In the early days I was one of 20 national advocates and it was a great to touch base with so many like-minded people.
National Advocacy Program
Since becoming an advocate I am quite proud to say that along with my fellow advocates we have helped to heighten the profile of MS and its challenges, particularly in Tasmania throughout the past six years.
I have thoroughly enjoyed being kept abreast nationally and internationally of current research and development and along with new developments in treatments and managing MS.
The fact that some of our key decision makers in Parliament now have a better understanding and awareness of MS and can understand our perspective when it comes to decisions they make, makes me feel assured we all have made a positive difference for the MS community.
One example I’m particularly pleased with was the introduction of medical cooling rebates for people with MS to install air conditioners. It began with approval in NSW and last year the Tasmanian Government also came on board endorsing a rebate of $135 per annum.
It might not sound like much but it’s a great feeling to know that through our advocacy efforts we helped to raise awareness of this issue and it has resulted in people with MS having more money in the hip pocket.
Having fun at the MS photo shoot with Tasmania Advocate Jenny Wallis
My main focus in this position is to provide leadership, management, and opportunities for the advocates so we can build a culture of ongoing success and growth. My view is if we can keep the advocates program strong we can continue to keep the voice fighting for people with MS across the country strong.
My role will see me further develop this program, fine tune and enhance our skill base and most importantly recruit additional advocates to join the effort.
I got involved in advocacy mainly to join the fight towards a cure for this disease.
While I’m certain this is close I also believe it is important not only for people with MS to be represented by people with MS, I see it is our shared responsibility to absolutely ensure political decision makers know the impact MS has on us all so that sound and appropriate decisions can be made that have a direct and positive impact on our future!
The MS Australia National Advocacy Conference later this year is now fast approaching and I look forward to learning more about and developing strong relationships with all our current advocates throughout the country.
With MSA Chairman David Barnes, MSA CEO Debra Cerasa, Senator Kate Lundy (chair of the Parliamentary Friends of MS) and MSA Vice Chair Ian Pennell
It would be remiss of me with this opportunity not to give a special mention to my wife Jane, daughters Grace and Nicola and our extended family who are all extremely proud I have gained this position.
Like many families touched by MS they too have lived alongside me during this journey and all the highs and lows.
Jane and I were only married just over a year when I was diagnosed and to know that we have been able to call on the great support of family and friends when we`ve needed them has been fantastic.
They know all too well the challenges, frustrations and compromise we have made throughout the times when MS hasn’t allowed me to be my best.
I’m sure this is the same for so many other people living with MS across the country. I am so proud to be in a position where I can support you all as well.
I have many challenges to achieve in this role and I am ready for them. People with MS deserve to be represented to the highest level possible!
So to finish…..Thank you & watch this space!