The Role of MS Organisations – A Perspective

An opinion piece by MStranslate co-founder, Brett Drummond

“If you’re walking down the right path and you’re willing to keep walking, eventually you’ll make progress” – Barack Obama

I am an opinionated person.  Pick a topic – sports, politics, research, which type of apple is the best (it’s Granny Smith by a mile, the crunch to juice ratio is perfect) – and I will happily share my thoughts on them.  I like to think that as I’ve matured as a person (some that know me may scoff at the concept that I’ve matured at all), I’ve also become much better at listening to other viewpoints and learning to appreciate them as well.

Those who have engaged in conversation with me in the past may have heard my opinions on the strengths and weaknesses of MS organisations around the world.  However, this article isn’t about that…in fact, it goes to a much more basic and more fundamental question.

What is the role of an MS organisation?

To answer this, let’s break it down to three key areas that I think are probably the focus of many around the world…

FUNDRAISING

The first memory that I associate with MS came from early primary school with the MS Read-a-thon.  The concept:  children get friends and family to sponsor them to read books, the more books they read, the more money they raise.  This money was then donated to, what would have been at the time, MS Australia.  This was a LONG time ago now, but the fundraiser still exists to this day.  Now though, events take place all the time, all across the world to raise money for the local MS organisation.  Charity bike rides, walks, auctions, marathon teams, bake sales…the list goes on and on.

So where does this funding go? The image below is taken from the National MS Society (US) financial report from 2015.  As you can see, approximately 26% goes towards research funding, 37% towards services for the community and 16% towards public and professional education.

If we look closer to home, we can assess the financial report from Multiple Sclerosis Research Australia in 2016 (shown below).  From this, it can be seen that around 65% of the money that they raise goes towards research grants or research expenditure.  Obviously, this is going to be higher than the US figures, as Multiple Sclerosis Research Australia aren’t responsible for the provision of services (this is covered by MS Australia).

Why is this research funding critical?  In Australia, the NHMRC reported that in 2016 they funded over $788 million of competitive research grants.  Whilst this seems like a lot of money, this was a success rate of less than 18% of total applications.  In the US, the NIH invests over $32 billion in medical research annually – however, the success rate again for competitive grants is barely over 20%.  Therefore, having organisations ensure that funding is provided to MS research is critical to making sure that projects and progress continues.

Although it is great to see significant funding devoted towards MS research, seeing more community involvement in the types of research supported would be fantastic. However, this is a topic for another article and something MStranslate will be addressing in the near future.

SERVICES

Traditionally, this has been the backbone of the role expected of an MS organisation.  The system was set up that organisations would listen to the needs of their community and then work to address those requirements.  This might have been in the form of community support groups, mobility aids, air conditioning units or advocating on their behalf.

There has been discussion that this is becoming less and less of a focus from the MS community and organisations alike. It was once explained to me that, as medications improve, people’s reliance on the support services offered by these organisations diminishes.  I’m not in a position to comment on whether this is true, though I would be interested in hearing your feedback on the matter.

What I would say is that there are many instances in recent memory that highlight the need for MS organisations to continue to act as strong advocates for their community.  Such matters as the effective rollout of the NDIS here in Australia, the continued access to medications for people with higher EDSS in New Zealand, or the ability for people with MS to obtain fair and appropriate healthcare throughout the world spring to mind.

EDUCATION

Certainly, this is an area that seems to have grown significantly over recent memory.  In our experience, the thirst for knowledge from the MS community is insatiable.  This ranges from information to the newly diagnosed about basics such as ‘what is MS?’, to more detailed resources to help guide treatment decisions, to summaries of recent research findings and the benefits and outcomes that might arise from them.

As we saw from the NMSS financial figures, it is something that they place a large emphasis on, although it must be said that we can’t see the breakdown between public and professional education.  In my opinion (and obviously there is bias considering the nature of what MStranslate does), education is a huge component of the responsibility of MS organisations.  At a time when you are faced with so much uncertainty, having access to accurate and easily accessible information is critical…even if sometimes the answer just has to be ‘unfortunately, I don’t know’.

WHAT IS THE ROLE?

So after all of that, have I actually answered the question that I set out to address?  I think the answer is ‘definitely maybe’.  In the end, I think it is the role of an MS organisation to be responsive to their community and provide whatever support is necessary to the best of their ability.  Using that definition, maybe MStranslate is more of an MS organisation than I’d initially thought.

The final message is this…clearly the aspects that I have talked about today show that organisations need to flexible, responsive and able to handle a wide range of responsibilities.  For this to be effective though, a well-known phrase stands out:

‘Jack of all trades, master of none’

Everyone should stick to their strengths, work together, make sure all bases are covered and that the best outcomes are achieved for everyone.

For now, I’m off to eat a Granny Smith apple!