Insights from the top – MND Australia
MND Australia’s National Executive Director Carol Birks spoke with Buchan’s Haley Price to detail the organisation’s key goals, initiatives and motivators; further highlighting MND Australia’s vital role in our community during National MND Week (5–11 May.)
The harsh reality of motor neurone disease (MND)
Imagine the heartache of being told you are dying. Fast. That your muscles are shutting down, and eventually you won’t be able to walk, talk, or breathe. All the while, your brain remains fully alert and capable of comprehending your physical demise. This is the harsh reality of people diagnosed with motor neurone disease (MND.) It’s sudden. Death typically occurs within 3-5 years. There is no cure.
It’s a prognosis that sends even the most resilient people into a spin. Many haven’t even heard of MND when they’re diagnosed. It’s a time heavied by feelings of intense confusion and sadness; defeat is a known end, no matter how the journey is navigated.
One organisation helping map this journey is MND Australia, which works to improve the lives of all Australians touched by MND by influencing policy, providing trusted information, and promoting and funding the best research.
The drive behind MND Australia
MND Australia’s National Executive Director, Carol Birks, still remembers the first time she met someone with MND and says the experience inspired her to pursue a career helping people with this debilitating disease.
“I’d been working as a nurse in palliative care and oncology for more than 20 years before I met someone with MND; a woman who’d lost the ability to talk. She would communicate via a special device that wrote what she wanted to say on a long string of paper. It was so laborious, but she was determined to communicate. Her tenacity and strength really stayed with me,” said Ms Birks.
Ms Birks now has more than 12 years’ experience working with the MND community. The first state associations for MND support were established in 1981 and MND Australia was later officiated as a standalone national organisation in 1991, employing Ms Birks as National Executive Director in 2006. MND Australia’s small dedicated team works closely with the state MND associations to facilitate national advocacy, information and awareness and work hard to engage with policy makers, researchers, clinicians, the media, donors and numerous other stakeholders who can further the long term goals of the MND community.
“We are committed to providing a strong, united national voice for people with MND, who commonly lose the ability to speak at all,” said Ms Birks.
Speaking loud and clear - and gently too - for people with MND
Ms Birks is a commendable leader.
Her mission is to improve life for those living with MND and their families. This is a goal born from years working with patients and her first appointment with MND NSW, where she worked as the family support manager. Ms Birks said the state MND association family support team members are often among the first to offer advice to people with MND and these initial conversations are some of the hardest.
“We are always honest, which is tough. The absolute shock and devastation that people with MND feel is truly palpable. We know, and they know, that they will eventually be robbed of most function that we take for granted – like being able to hug our loved ones,” said Ms Birks.
“There currently isn’t an effective treatment available for MND, so we help people living with MND find hope in other places. The state-based MND associations run regular charity fundraisers with the MND community and I am constantly in awe of their determination. These initiatives provide funding for support services, special aids to help people living with the disease, and vital research for a cure,” said Ms Birks.
The pursuit for a cure
Ms Birks said there is promising momentum in the search for a cure. The International ALS/MND Symposium attracts around 800 delegates every year, which is a testament to the global brains trust working very hard to cure this disease.
“On a local level, MND Australia’s research arm, the MND Research Institute of Australia (MNDRIA), maintains close relationships with academics and clinicians to stay abreast of advances in research. Our panel of experts carefully evaluate research projects and direct funds towards those projects that have the best chance of improving the lives of people with MND. It’s vital that we keep raising money to fund these research initiatives.”
How you can help
Donations help to ensure that the needs of people with MND are heard by the government on the issues that matter – disability support and services, palliative care, aged care, support for carers and research funding.
If you would like to make a donation to MND Australia click the ‘make a donation’ tab at www.mndaust.asn.au/make-a-donation/ If you would like to access support services please contact the MND association in your state or territory on 1800 777 175 or http://www.mndaust.asn.au/state-mnd-associations/
Carol (third from right) at the Canberra Walk to d’Feet MND event in March 2013, surrounded by family, friends and MND Australia’s Young Ambassador, Olympic Swimmer Brittany Elmslie (far right.)
ASX updates to social media and continuous disclosure
By Shevaun Cooper, Senior Account Executive, Investor Communication
“Even if you don’t think you’re at high risk of a material information leak on social media channels, monitoring is the first step in devising an effective social media engagement strategy.”
Stay informed of changes to ASX continuous disclosure rules and how they affect your company
In March, the ASX updated its Guidance Note 8: Continuous Disclosure: Listing Rules 3.1 – 3.1B highlighting its expectations around the monitoring of social media. Along with other updates, Guidance Note 8 requires that listed companies have processes in place to monitor blogs, chat-sites and other social media sources that they are aware of. The revised guidance note came into effect yesterday, 1 May 2013.
So, what does this mean for your business?
The updating of ASX’s guidelines around social media and continuous disclosure heralds a new era of compliance for companies. What we expect to see is a greater emphasis on understanding social media, knowledge of online audiences and monitoring of social media communities where listed entities are regularly discussed.
If your company detects signs that information has been leaked, it should contact the ASX immediately to discuss whether it is appropriate to request a trading halt.
If you are negotiating a market sensitive transaction, your company (or a representative) should be monitoring social media for signs that information about the transaction may no longer be confidential. A draft letter to the ASX should also be prepared requesting a trading halt and a draft announcement about the negotiations should be ready to send to the ASX in case any details are leaked.
Navigating the complex world of social media
Buchan has examined the updated guidance note and compiled a summary of what the social media guidelines mean for listed entities. We have also outlined a four-pronged approach (Identify, Analyse, Listen, Engage), which will enable your company to identify who is already impacting your brand and provide a strategy for the ongoing monitoring of key sites. We can also assist with developing a comprehensive social media engagement plan if you are interested in taking the next step with your media planning.
Buchan’s Investor Communication (I-comm) team has decades of experience supporting publicly listed companies in a highly regulated environment. Through our partnership with global PR agency Waggener Edstrom, we deliver access to proven proprietary IP social media tools which can assist your company to track and engage with your online audience.
Whether it’s just getting the basics right or focusing on a specific campaign, our digital media and investor relations specialists can develop a tailored strategy when you’re ready to move into proactive social media engagement.
More information on how Buchan can assist your company can be found here: www.buchanwe.com.au/data/ASX-Guidance-Note-8-update.pdf
Please feel free to get in touch with me if you’d like to chat further, firstname.lastname@example.org
Rock social media in 30 minutes a day
By Clementine Stuart-Russell, Corporate Branding and Technology
Avid readers of the Buchan Blog would know, we’re constantly on the lookout for tools that we can share with our clients and team to better leverage our personal and professional networks.
This morning, while reading one of my favourite blogs ‘The Website Marketing Group Blog’, I discovered this little gem of an infographic (below).
We all experience times when sharing content over social media falls prey to more pressing client, media or internal requests. This infographic serves as a reminder re how easy it is to stay on top of your networks, if you invest a little time.
My top takeaways:
- Don’t just have the intention – action it!
- Don’t sit on the sidelines
- Establish a daily routine – there’s always time to talk about what you’re interested in
- Be confident in the content you share
I hope you enjoy this infographic as much as I did. If you have any questions on how to kick start your social media efforts, drop me a line at email@example.com
Social media, governance and risk management - getting your board on board
Make sure you catch Buchan’s Senior Account Director, Belinda Thomson, in the April issue of the Chartered Secretaries Australia Journal: ‘Keeping Good Companies’. Written in conjunction with governance expert David Rowan White, the article provides an insight into how boards and CEOs are approaching all things social media, including governance and risk management.
The full article is only available to CSA subscribers, but some of the key points include:
- Social media management transcends marketing - it must also include companies’ continuous disclosure of policies.
- It is vital for executives, boards and governance and risk managers to understand the mechanics of social media generally, and the organisation’s assets.
- Rules and procedures for monitoring social media channels are important, and a process must be set in place for deciding when to inform the CEO and board.
Her hot tips for managing social media risks:
- Know the territory
- Audit your social media assets
- Know who monitors the brand – and how often
- Don’t just have rules; have best practices
For more information on social media best practice contact Belinda at firstname.lastname@example.org
Where should you be social? Less is more!
A special guest post from Peter McFeely, Head of Digital at Waggener Edstrom, Singapore
Recently I presented at Social Media Week in Singapore, on the topic of ‘Where Should You Be Social?’ The session proved very fruitful with more than 60 attendees taking part in an active discussion on how best to rationalize a personal or professional social presence.
The rapid rise of social media has left us with dozens of mainstream options for creating a social media profile, but it’s difficult to maintain a social life if all you do is manage social media all day. We talked about the need to concentrate efforts, either as an individual or a company, in the platforms that really matter. In short, the way to do this is to have clearly defined objectives, identify where the target audience is already active, and understand their motivations for using each platform.
The crux of the argument is that splitting a social presence across too many platforms is not only time consuming, but also ineffective and potentially damaging to one’s reputation or brand. We had all attendees complete a simple survey which backs up this hypothesis – the more platforms created, the lower the proportion actively managed.
- Everyone’s Everywhere: From a personal perspective, the vast majority (46%) have a presence on 6-10 platforms. A further 23% have a concentrated presence on 0-5 platforms, while as many as 17% have 16 or more profiles.
- More Presence, Less Activity People using 10 or less platforms tend to use 66% of their profiles on a very frequent basis (at least once every two days) with only 23% logged-into infrequently (less than once a fortnight). However, as more platforms are added, the usage becomes lower – those with more than 16 platforms use just 30% frequently while 57% are infrequent. Of these, a large amount of profiles are completely inactive, but still publicly discoverable.
- Conservative Professionals People are more conservative when it comes to business – 84% of respondents use 0-10 platforms professionally. Again, the utilization of platforms drops dramatically as volume increases. Users with 0-5 platforms access 48% of their profiles frequently and 19% infrequently, though these respectively fall and rise to 20% and 71% for users with more than 15 profiles.
Inactive and infrequently updated platforms aren’t going to do anything to advance a personal cause or brand reputation. In many instances, they are even going to be damaging as the owner is perceived as disorganized, uncommitted, or unaware. As such, it’s certainly better to have fewer platforms and use them more effectively.
- In the Lead: With regards to platform popularity, it’s unsurprising that Facebook comes out on top for both personal and professional use. It turns out that some people actually do not have a Facebook page with 94% using it personally, but a slightly lower 83% for business. What’s interesting is that business pages are used or updated much less frequently than personal pages – 90% and 52%, respectively.
- Who’s Popular? Other popular personal platforms include WhatsApp (90% use it, of which 85% do so frequently) and YouTube (81%, 63% frequently), while LinkedIn (56%, 25% frequently) and Skype (56%, 27% frequently) are utilized more often by businesses. Despite its continued growth, Twitter only comes in fourth for either use with 77% and 54% penetration in personal and business circles, respectively.
Brands need to reflect the consumption habits of their audiences to take full advantage of their social presence. For instance, the figures indicate that although YouTube is used on an almost daily basis by individuals, less than half of respondents have business accounts and nearly 75% of them fail to use the platform more than once a month. As such, it is often a missed opportunity.
That doesn’t necessarily mean that brands should simply concentrate their marketing efforts on the platforms most popular for personal use. The most important thing is understanding the audience’s motivations for using each platform – it’s unlikely that anyone wants to receive advertising through WhatsApp and, similarly, Facebook isn’t always the right place for marketing.
Our brief study shows that when it comes to managing a social presence, less is definitely more. Individuals and brands need to stick to the three golden rules (identify objectives, establish where the target audience is active, and understand their motivations) and build from the ground up, adding social platforms only when they are ready to pay them the attention they need. That’s the key to understanding where you should be social, and how to be successful when you get there.
For more information and to continue the conversation, Peters’ blog can also be viewed here