Farewell folks, I’ve had a blast!

The time has come for me to leave my role as the CEO of MSA and I felt it was important to take some time to reflect on all that we’ve achieved together during my stewardship.

As we all know, the federated structure has made it a ‘challenging’ environment at times but through that we have grown stronger and supported people living with MS which is all that matters and has ever mattered to me.

We can’t forget that MSA exists because of the contributions of the MS societies around Australia. We must continue to work together and with MS Research Australia to increase our reach and maximise our knowledge so that we can support the 23,000 people living with MS in the country.

What has MSA achieved over the last few years?

  • We’ve continued to build the advocacy programme, playing an important role as part of the broader health and NGO sector in response to a tough budget for all people and representing those affected with MS, last year.
  • Our digital work has increased MSA’s presence in the social media environment to support people with MS and increase recognition of the MS brand
  • Most importantly, we deliver work that supports people with MS and their networks in a way that continues to allow hope for the changing face of the diagnosis

A history in pictures

From L to R: Ken Baker, CEO at NDS; Carol Birks, CEO at MND Australia; Tricia Melowney from Every Australian Counts; Steven Gianni from AFDO

From L to R: Ken Baker, CEO at NDS; Carol Birks, CEO at MND Australia; Tricia Melowney from Every Australian Counts; Steven Gianni from AFDO

John Study Award Dinner 2013. From L to R: Christina Gillies, Board Director and Carol Langsford

John Study Award Dinner 2013. From L to R: Christina Gillies, Board Director and Carol Langsford

MSIF Board meeting 2014. Myself with Weyman Johnson, President of MSIF Board of Directors

MSIF Board meeting 2014. Myself with Weyman Johnson, President of MSIF Board of Directors

Some Instagram fun on #WorldMSDay

Some Instagram fun on #WorldMSDay

A group shot of our advocates on World MS Day 2015 with Josh Hall from Sailing Sclerosis on the dock at Darling Harbour

A group shot of our advocates on World MS Day 2015 with Josh Hall from Sailing Sclerosis on the dock at Darling Harbour

On board the Oceans of Hope on World MS Day 2015

On board the Oceans of Hope on World MS Day 2015

MSA team planning day 2014

MSA team planning day 2014

Senator Hon Kate Lundy with PH Friends of  MS group. Parliament House, Canberra 29 October  2014 . Images David Foote - AUSPIC/DPS

Senator Hon Kate Lundy with PH Friends of MS group. Parliament House, Canberra 29 October 2014 . Images David Foote – AUSPIC/DPS

From L to R: Guest speaker Sarah Ross-Smith, Lawyer and MS angel with myself at Parliamentary Friends 2013

From L to R: Guest speaker Sarah Ross-Smith, Lawyer and MS angel with myself at Parliamentary Friends 2013

The advocates conference guest panel 2013. From L to R: Ken Baker, CEO at NDS; Carol Birks, CEO at MND Australia; Tricia Melowney from Every Australian Counts; Steven Gianni from AFDO

The advocates conference guest panel 2013. From L to R: Ken Baker, CEO at NDS; Carol Birks, CEO at MND Australia; Tricia Melowney from Every Australian Counts; Steven Gianni from AFDO

From L to R: Guest speaker Sarah Ross-Smith, Lawyer and MS angel based in Canberra with myself

From L to R: Guest speaker Sarah Ross-Smith, Lawyer and MS angel based in Canberra with myself

Senator Hon Kate Lundy with PH Friends of  MS group. Parliament House, Canberra 29 October  2014 . Images David Foote - AUSPIC/DPS

Senator Hon Kate Lundy with PH Friends of MS group. Parliament House, Canberra 29 October 2014 . Images David Foote – AUSPIC/DPS

Team planning day 2014

On board the Oceans of Hope

On board the Oceans of Hope

A group shot of our advocates on World MS Day with Josh Hall from Sailing Sclerosis on the dock at Darling Harbour

A group shot of our advocates on World MS Day with Josh Hall from Sailing Sclerosis on the dock at Darling Harbour

Social media #WorldMSDay

Social media #WorldMSDay

Myself with Weyman Johnson, President of MSIF Board of Directors

Myself with Weyman Johnson, President of MSIF Board of Directors

From L to R: Christina Gillies, Board Director and Carol Langsford

From L to R: Christina Gillies, Board Director and Carol Langsford

Looking ahead

While celebrating past achievements is important, so is looking to the future and planning how we will continue to deliver our strategic plan with even more energy and expertise.

I am pleased to say that it is an exciting time for MSA. The Advocacy network we are building is growing. The continued energy, passion and contribution from our volunteer National Advocates truly is well recognised. The knowledge and awareness of us as the national peak body in the national media is growing as well.

The challenge ahead is to keep learning and getting better at what we do. That’s what the Strategy and Strategic Plan seeks to achieve.

My feelings about leaving are mixed; I’m excited about the new opportunity but I’m sad because being a part of the MSA community has been such a significant part of my life since December 2012 and I will miss it.

I want to thank you all for your support and counsel and send you my very best wishes for good health and happy lives.

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Nine weeks aboard Oceans of Hope

Many of you will know that our National Advocacy Program Coordinator Andrew Potter has spent the last 9 weeks aboard the 67 foot sailing boat Oceans of Hope helping to raise awareness of MS. We’re thrilled to be able to share his final blog at the end of what he describes as being a ‘life-changing journey’… Over to you Andrew.

With immense gratification and also with a sense of humility I share this my final blog and my reflection of some of my experiences aboard Oceans of Hope. I have lived the absolute wonder and pleasure of having been crew from early May in Auckland. My journey has included sailing from there to Sydney, Cairns and only a couple of days ago arrived here in Darwin.

I shall return to home shortly to Tasmania, having been away for nine weeks. As luck would have it apparently I have missed a substantial winter period!

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This amazing sailing opportunity I have thoroughly and wholeheartedly enjoyed. I have met and crewed with some amazing people – a range of folk from around the world. This has also included all the permanent and some of the relieving Danish crew. I have been so fortunate to meet all the team from Sailing Sclerosis. I have also experienced the prize of sailing with three different crews – 7, 8 & 9. I also had the pleasure of meeting crew 6 and thoroughly enjoyed their company, albeit briefly in New Zealand. All great people with history of their own and all of whom I will forever respect and admire and I trust enjoy a special friendship with as fellow members of the OOH Crew Family.

My entire journey has taught me so much of human spirit, commitment, determination, grace, courage and reward.

The wonder has also been mine of actively being involved in Taster Sailing opportunities for people in Auckland, Sydney, Newcastle, Southport, Cairns and Darwin. These have for me been a series of yet additional very powerful, emotional and rewarding experiences. In each of these places the joy of sailing was to behold. Laughter, smiles reward and hugs all round became the “norm” for us all involved in these. Thank you so much to you all for sharing a part of your sailing venture with us – you are all so very inspiring!

For me the entire OOH opportunity has been life changing. My family and I have lived with the challenge of MS in our world for over half my life. The opportunity of being crew for OOH feels as if I have been a prize winner of a once in a lifetime opportunity – the Oceans of Hope opportunity!

darwin2-11

I will continue motivated, energized and entirely focused as I move positively forward together with all my team of Advocates throughout Australia, along with the great colleagues I work alongside with at MS Australia, to bear witness to and willingly to be a vehicle for positive political and social change – Oh and yes I will sail sail sail…

I look forward to the next chapter for this boat, this great boat OOH, as more lives are changed, as more people from throughout the world have an association with and continue to be moved by this strong and powerful medium.

I wish you safe passage as you complete your circumnavigation OOH. It will be with a heavy heart I bid you farewell – for now!

Warm Regards from he who so loves a shower and shave now more than ever! Thank you!

Andrew Potter

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Incoming: Oceans of Hope

It’s with great delight to inform you that the Oceans of Hope vessel is only a few weeks away from making its grand entrance in Sydney Harbour.

The 67ft yacht is currently completing an around-the-world voyage to raise awareness of multiple sclerosis.

The global voyage will showcase the possibilities of those with a chronic condition, and hopes to change the perception of people with MS and their abilities.

Our very own National Advocacy Program Coordinator, Andrew Potter, will be joining the sailing crew for two and a half months, starting in Auckland and disembarking in Darwin with stops in Sydney, Newcastle, Brisbane, and Cairns.

At each port, Andrew will be greeting others in the MS community, sharing stories and sailing with them for a few hours.

Hear more about Andrew’s story in the below video.

Oceans of Hope is the first ever circumnavigation crewed by people with multiple sclerosis. The team at MS Australia and I are thrilled to support  this global initiative and we cannot wait to see the yacht and follow Andrew’s journey.

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Palliative Care Australia and the Neurological Alliance Australia position statement

In late 2014, Palliative Care Australia (PCA) and the Neurological Alliance Australia (NAA) released a new position statement on ‘Palliative Care and Neurological Conditions’. The main focus of adopting a palliative approach to neurological conditions is described as “maintaining dignity and increasing hope through the disease process by adequately managing physical, psychological and existential suffering while assisting with decision making process”.  NAA is an alliance of not-for-profit peak organisations representing adults and children living with progressive neurological or muscular disease in Australia and MS Australia is a proud member of NAA. Palliative care provides a good opportunity for those with chronic conditions, their loved ones and carers to achieve the best quality of life before death. PCA and NAA call for improved access to palliative care services for those with neurological conditions along with education for health professionals, a collaborative approach between neurology and palliative care teams, and the development of a national framework outlining a pathway for palliative care service provision. A greater acknowledgement for the importance of access to palliative care for people with neurological conditions is critical.

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Uninterrupted

MS Australia has been working on a special project and I’m excited to finally reveal what it is. A brand new blogging platform, Uninterrupted, will be launched in the coming weeks, where people from the MS community are able to blog about their experiences with multiple sclerosis. It will be a supportive online network where you can share or read stories about personal experiences and we are anticipating everyone will get something out of it. Red&Black_Tagline We are now looking for interested bloggers who would like to take part in this new platform. You could be a carer, family member or friend, or someone living with a diagnosis. All you need to do is submit a blog post of around 300 words on a topic of your choosing to give us an idea of your written ability and the focus of your blog. The commitment is to write a blog post at least once per fortnight, for a minimum of 12 months, so people can follow your journey. You will receive initial training from award winning blogger and disability activist, Carly Findlay, as well as the opportunity to interact with those in the MS online community, where people can subscribe to your blog, share or comment. All entries will be assessed by a panel of judges and we cannot wait to read your stories.

To view the platform, visit http://www.uninterrupted.org.au

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Oceans of Hope and Andrew’s Story

Growing up in rural coastal Tasmania, my family was never far from the water. We were blessed with a beautiful natural environment and we wanted to take full advantage of it. Surfing, kayaking and sailing were common activities we all enjoyed and for many of my younger years the beach, being on the water or following Dad around looking at what seemed to be every yacht club and each and every yacht under construction seemed to be almost a regular weekend activity!

In the 1980s as a teenager my father, always one to tinker with things, embarked on his most ambitious project – building a 41ft cruising yacht from scratch!

He had grown up in Hobart and was a keen sailor and former commercial fisherman so he was no stranger to boats but it was still a huge undertaking but one that we all enjoyed.  It was around this time I experienced my first MS symptoms and we, the entire family it seemed, embarked on the huge challenge of building this yacht, personally, I was faced with the challenge of adjusting to ‘life with MS’.

It wasn’t always an easy road but throughout I’ve been fortunate to have the love and support of my wife Jane, my parents and our two beautiful daughters.

Five years ago my father FINALLY completed the yacht. A labour of love (and much frustration) for almost 25 years.

Andrew 2015

Now, it is complete I have be reintroduced to the world of sailing and have had the pleasure of introducing my two daughters – a new generation -to being on the water. We regularly spend time as a family on ‘Panumena’ (an Aboriginal name meaning ‘Ocean Voyage’) sailing around the beautiful coast of Tasmania and sometimes further afield.

My health as well is good. I’ve had my fair share of ups and downs over the last twenty five years but I am now fit and healthy and have gained some balance to life with MS. Still, I don’t take anything for granted and I always make a point of continuing to celebrate each and every day of good health.

Which is why I am so excited about the Oceans of Hope journey. When I first heard of the Oceans of Hope Yacht I couldn’t contain my excitement and knew that if I was fortunate enough to be part of the journey it would be truly a once in a lifetime opportunity.

To know now that I will link up with others who like me have lived a life with MS and share a love for being on the water is so special and I just can’t wait to get started!

Andrew Potter, MS Australia National Advocacy Coordinator

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A positive start for new Health Minister Sussan Ley

2014 was a busy year for the team at MS Australia and as we start 2015 it has been fantastic to get some positive news on an issue we have advocated strongly against.

As some of you may be aware MS Australia joined a number of peak bodies in opposing the Federal Government’s proposed introduction of a GP co-payment. A system which would have placed a significant financial toll on people with MS and their carers.

With the introduction of Health Minister Sussan Ley, the MS community has been acknowledged. MS Australia commends her scrapping planned reductions to the Medicare rebate.

Andrew Potter, our National Advocates Coordinator, visited the GP on average each couple of weeks throughout the year, and if this is any reflection on those with multiple sclerosis, it would have been a huge out of pocket burden. These visits add up and the potential for increased GP charges could limit the ability to obtain a timely diagnosis, seek treatment for their symptoms and get access to appropriate medicines.

Minister Ley has demonstrated a willingness to listen to the community and work collaboratively to find solutions. MS Australia welcomes Minister Ley’s approach in seeking consultation with the sector.

It’s been a great start to 2015 and we look forward to continuing to advocate and make inroads for people with MS on important issues like this.

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