June was MND Awareness Month, and this year the MND Association decided to engage with their MND research community and host a ‘blog a day’ on their MND Research blog. Two months later, I’ve finished analysing the data and I thought I’d update our ReCCoB subscribers on the ‘blog a day’ initiative and some of my personal highlights.
Unlike ReCCoB, our MND Research blog is a lay blog aimed at people living with MND and everyone who cares for them. The aim of the ‘blog a day’ project was to raise awareness of MND research during the month of June, highlighting the diverse range of research being conducted around the world and how various people and organisations work together towards a world free from MND.
The idea was discussed during a regular catch-up between myself and Belinda Cupid in March 2014, with the Research Development team then working together to generate a list of possible blog articles, along with people we could approach.
We then sent personalised emails, as well as a message in our March research e-newsletter to our researchers. We also used social media to extend our reach, with our fingers crossed that we’d receive the magic ’30 blog posts’.
In fact, we managed to exceed 30 and publish 46 blogs during June, from voice banking to the announcement of the UK whole genome sequencing project. The Association of Medical Research Charities and the International Alliance of ALS/MND Associations all got involved, giving their personal voices to make up our global research voice.
Some of my personal highlights include a blog by Dr Scott Allen from the Sheffield Institute for Translational Neuroscience (SITraN). Scott gave a great insight into what it feels like to be a healthy control in an MRI scanner, with a very personal reflection of what it must feel like for people living with MND.
Another highlight of mine was the ALS Biomarkers study blog. Dr Andrea Malaspina (Queen Mary’s University of London) explained about the problems faced by researchers when measuring proteins in the blood and the importance of getting a sample from the clinic to the lab as soon as possible.
I particularly liked Andrea’s quote: “There are too many variables, too much noise! But the right signal is hidden somewhere, and we will eventually manage to find it for the benefit of science and above all, of people living with MND.”
Raising awareness of MND research
The ‘blog a day’ initiative was designed to increase awareness of MND research with people living with and affected by MND. Would we do this? Would anyone even read the blogs? After analysing the data, I can happily say ‘we did!’, which I thought I’d highlight in this infographic below:
After reviewing all the information, our ‘blog a day’ initiative raised awareness of MND research during Awareness Month 2014. This is one way in which the MND Association is working towards their strategy to better inform and improve how we share knowledge and information on our research with people living with and affected by MND.