Championing the MS Cause and building our voice!

Well….where do I start? It’s great to be back blogging after a week off last week to host the 2013 MS Australia Forum; ‘Championing the MS Cause’, incorporating the National Advocates Conference in Melbourne.

You may have already read some of the thoughts of our guest blogger Andrew White – a truly inspirational person with MS – on the conference, but I thought I’d also pen some of my own reflections of what was a very productive two days.

The concept behind the conference was simple – to enable the previously established National Advocates Conference, bring as many of our National Advocates together to explore how we can extend the reach of our voice as an organisation, and at the same time open up the dialogue to other interested stakeholders.  There are so many people who have a shared passion for helping people with MS and the disability sector more broadly and it was great to see the response we received.

Explaining the role of MSA

Explaining the role of MSA to attendees

We were so pleased  to have so many of our advocates attend the two days and as CEO it was my first real chance to meet them, to learn about their experience with MS and to hear their thoughts about MS Australia and our performance to date. They provided some fantastic insight and I wish to take the opportunity to thank them for their cooperation, support and constant effort to advocate for our organisation and people with MS. They do, after all, volunteer their time, but they do so to try and make a difference and to give back to their community and I think that is really special.

But back to the Forum and can I just say WOW….I was simply blown away from some of the stories we heard!

Former Winter Olympian Janine Shepherd, who once broke several vertebrae in her neck and back, stood in front of our group and opened up on the unexpected challenges she has faced in life and how her positive attitude and determination helped her to achieve her goals after becoming a paraplegic.

We also heard from Grant Barker, a social media strategist, about his family’s battle with both his wife and himself receiving a cancer diagnosis within a week of each other and how they have harnessed their energies to confront the challenges and turn them into positives.  NSW MS Ambassador Stephen Papadopolous discussed how his life has been linked with MS from a young age and we were entertained at the Forum Dinner by a young Comedian/Musician Alice Fraser whose mother was diagnosed with MS before Alice was born.

We were also priviledged to have special guests Carol Birks, Trisha Malowney, Stephen Gianni and Ken Baker take part in a Q+A style panel on the NDIS

We were also priviledged to have special guests Carol Birks, Trisha Malowney, Stephen Gianni and Ken Baker take part in a Q+A style panel on the NDIS

Now I don’t like to play favourites and I was so inspired by every presenter, but the connection with Carly Findlay certainly stands out.  Carly is a leading blogger and disability advocate.

Carly is such as special person but I don’t think any of us could have expected what happened over the course of the conference when Carly was confronted with an example of prejudice towards people with a disability. What followed was a case of ‘advocacy in action’. Carly used social media to not only raise awareness of the incident but to also affect change. It was simply fantastic and a great lesson for us all. You can read all about it at Carly’s blog here:

Since then we have learnt that Carly has been awarded the BUPA “Blogger of the year award”. 

The rest of our time in Melbourne was spent fleshing out our priorities and stance as an organisation and how we can best advocate for people with MS. It was an eye-opening and vigorous conversation but I am excited about what transpired and what was shared.

With MS SA/NT Ambassador Mark Taplin

With MS SA/NT Ambassador Mark Taplin

It is humbling as a CEO to know that we have a passionate following of people to call upon when needed and I look forward to working with them in the months and years ahead as we build MSA, our social media presence and our advocacy voice.

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1 Response to Championing the MS Cause and building our voice!

  1. Finally getting a chance to catch up on some reading – thank you so much for these lovely words and for having me at the conference. I really enjoyed my day and was good to meet so many activists. Glad I could help you all in your social media journey 🙂

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