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Researchers raise awareness for MND

June is MND Awareness Month and this year the Motor Neurone Disease (MND) Association’s theme is ‘VOICE’. Here Dr Samantha Price from the MND Association explains how an ambitious plan to host a blog a day is highlighting the role of research.

Awareness Month is our opportunity to raise general awareness of MND, a relatively rare disease that, as such, is often under the radar of the general public. Here in the Research Development team, we decided to use our ‘global research voice’ in a blog format.

About the MND Association

The MND Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning. We fund and promote research that leads to new understanding and treatments, and brings us closer to our vision of a world free from MND.

MND is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.

This year our awareness campaign is based on voice because people living with MND can face communication problems as their speech deteriorates. Through local and national campaigning we can give people living with MND a voice; be it signing the MND Charter or by influencing the National Institute for Health and Care Excellence (NICE) guidelines on MND.

Blog a day 2014

This year, during a regular catch-up between myself and our Head of Research Belinda Cupid, we came up with the idea of using our global contacts to attempt to host a ‘blog a day’ during Awareness Month to raise awareness, specifically of the scope of MND research.

We had never previously attempted to engage on such a scale with our research community during Awareness Month.

At first, thirty blog posts seemed hugely ambitious, but after discussing ideas we generated a list of 40 individuals and organizations (including AMRC) we could at least approach.

An overwhelming response

So, we pressed send and waited... Would we reach the magic 30? Within just two hours the first email came back, then fully formed blogs. We never imagined researchers as far afield as Australia would respond having seen our messages on Twitter.

The blog posts started filling my inbox and not just from established researchers, but PhD students also responded to the call by providing us with exciting summaries of their work.

We didn’t expect such a variety. From X-rays to smart phone apps, the science covered was much more diverse than we could have imagined. Contributors even shared their personal experiences of taking part in clinical research, as well as fundraising activities with ‘streaking meerkats’ (yes, really)!

By the end of May we had received 44 blogs!  We are already beginning to see the impact of all our efforts, with page visits to our blog doubling and some extremely valuable positive feedback.

It’s not just about blogging

Blogging was just the start... Our amazing MND research family came back requesting MND Awareness Month wristbands, and then took pictures of them wearing them in the lab. Others are tackling the science of baking in our ‘MND Researchers bake off’ challenge - Victoria sponge iced neurone or MRI gingerbread anyone?

The ‘blog a day’ project was ambitious and a lot of hard work but we’ve been amazed and inspired by our research community, who have helped us raise awareness of MND this June. But then, how could I have ever doubted them?

Visit www.mndresearch.wordpress.com to view all the blog posts to date. Remember, there are 30 days in June, with cycling meerkats and postcards from Australia still to come!

Find out more about the MND VOICE campaign by visiting: www.mndassociation.org/awarenessmonth.