Tag Archives: raising awareness

250/365 РVideos about myasthenia 

What makes a great video? Is it humour, cute animals, a catchy song or an interesting narrator? While I understand the question is subjective, these are a few factors  of many that can add to a video’s success in holding a viewer’s attention.

The point of a video can be to entertain, educate, raise awareness or celebrate, but never just provide audio. There should be an interesting visual element to keep a viewer engaged.

Today my attention was drawn through Twitter to the video pulled together to celebrate the success of Myaware’s Kids weekend 2015. It does a great job of pulling together photos, video clips, music and text messages to highlight the good work. Its purpose in this tweet’s context was to raise awareness of the good work the charity is doing for children so that voters would select Myaware as Gamesaid’s charity of the year. 

In comparison to the information videos on Myaware’s site which to me seem to lack that interesting visual element, and are stuffy and stale, this was refreshing. It captures the energy of the work the charity does.

To move forward from the information videos that are out there at present, I’ve spoken for a while about putting together a TedEd video about myasthenia gravis. The challenge will be to make it engaging and fun as well as informative – if you have any ideas for how to do this please comment. 

137/365 – Raising awareness via Twitter competitions

Yesterday I received an interesting tweet that is definitely worth writing about. After entering a competition to win a pair of New Balance trainers on Twitter, I received a response from the company’s account. The sports brand has asked people to tweet reasons why they enjoy running with the hashtag #useyourrun. I decided it was a good opportunity to raise some awareness about myasthenia, and also  potentially win a new pair of top of the range sneakers, so I tweeted:

I run to keep on top of my #myastheniagravis

While this is true, I had also hoped that people looking at this feed would be curious and click on the MG hashtag. What has happened, if it comes true, is even better.

New Balance asked me to follow them so they could direct message me. They then asked whether I would allow my tweet to be part of a campaign they are running with the Hearst magazine group. As in the company that owns Vogue, Men’s/Women’s Health etc. Not only will the Twittersphere be curious about MG, but hopefully so will the thousands of readers of these magazines. I would say that is #winning at its finest. 

85/365 – Evaluating the success of 365 days of myasthenia

I was on a course yesterday (at the very cool Department for International Development office on Whitehall where I’m picture above) about evaluation when it comes to communications. It provided structures for making sure you build evaluation into your communication plan from the beginning and then covered the process all the way through to the reporting stage. While considering this for my work, it also made me think what I’d like success to look like for this blog. I realised I had no idea. 

Working with the IDIA (identify, develop, implement and analyse and report) structure, I decided to put down the ideas I had when starting the blog about what I wanted to achieve with it. 

  1. Raise awareness about myasthenia gravis.
  2. Improve understanding of what it is like to live with a rare condition.
  3. Promote the good work of Myaware  (and other charities around the world) are doing.
  4. Provide support for people who have recently been diagnosed or are struggling to cope with their MG.
  5. Encourage other people with MG to take on the idea of doing #100daysofmyasthenia.

While these goals sound good, one of the first things we learned was to make targets SMART (specific, measurable, achievable, realistic and time bound). As you can see, my aims are vague – without any clear markers of success it’s hard to know whether I am achieving these goals.

So here they are re-written:

Within the 365 days:

1. Raise awareness about myasthenia gravis by reaching 2,000 people who hadn’t heard about MG before. Of those people, 25% of them will feel comfortable talking to people about MG, particularly medical professionals they know, and take a pledge to do so.

2. Harder to make this one quantifiable – 25% of readers would be able to name 3 things that are difficult for those who live with MG. 

3. Depending on whether the Myaware website can record where traffic comes from, I will direct at least 200 people to their website and 30 new people will engage with the charity, via support or fundraising events and/or social media. 

4. Provide support for 12 different people who need it via comments/email and if they are London-based offer to meet face-to-face for a coffee. 

5. Get 5 people committed to do #100daysofmyasthenia and 5 people committed to do #50shadesofmyasthenia (for 50 days) on Facebook, Twitter or Instagram to raise awareness in 2016. 

Alongside this, I will also be looking at the statistics to gauge what content is popular, where my main readership is and how traffic is being directed to my website. Yesterday I had a quick check and was delighted to see that although only 7 people reached my website via search engines in January, more than 70 had in March – a 10% increase. 

To get some results for the points above, I’ll set up a survey to run on the website and then I’ll be able to report how I’m doing with this along the way.


66/365 – Thinking outside the box and raising awareness for myasthenia

So I had an email from one of my readers the other day with an innovative way of raising awareness that he has put into practice. Using Strava, the cycling app, he had renamed a section of a popular cycling route to ‘myasthenia madness’ to make people, who also bike that same section, curious about what it means. Many of them will most likely search the word ‘myasthenia’ in google and up myasthenia gravis will pop.

He wrote the email in response to what I wrote here about the importance of raising awareness and how it has the potential to save lives.  Perhaps one of these cyclists will also be in the medical profession, or know someone who is, and it will encourage them to learn, or remind themself, about MG. Then, as the universe tends to do, they may see a patient who hasn’t been diagnosed yet with symptoms that are familiar. Cycling that route could stop that patient being hospitalised with a crisis or worse. 

His idea is a solid one and I feel there is something bigger in it. To get people to know about myasthenia gravis, we need to make it a phrase that they hear or see a lot. One that they want to look up and tell people about. But how do we do that? I’m asking you reader, how? This could be a collection of small actions (in numbers reached not in effort) like what my reader did. Is there something you could do? 

I’m thinking about other ways I can raise awareness – the one thought I have had so far is to tie in a myasthenia fitness account on Instagram and tap into all the popular hashtags on there including fitness, diet and medical ones. I haven’t seen anything similar and as I spend a good bit of time training it would be straightforward. 

Anyway, I leave it with you the challenge of thinking laterally about awareness raising.