June is MND Awareness Month and this year our campaign is featured around the theme ‘VOICE’. Awareness month is our opportunity to raise awareness of MND, making society better informed about the disease. Here in the Research Development team, we are using our global research voice to raise awareness on our MND Research blog.
Our political voice:
80-95% of people living with MND will 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.
Motor neurones lose their voice:
However, it’s not just about our voice. Dr Frank Hirth (Institute of Psychiatry, King’s College London) stated during our Spring Conference in Manchester earlier this month: “Motor neurones affected by the protein TDP-43 ‘lose their voice’ and ability to communicate in MND” You can watch Dr Hirth’s presentation online here.
Our global research voice:
We will be posting a blog a day (maybe even two!) to raise awareness of all aspects of MND research. These guest blogs will be written by a variety of different people (researchers, lab managers and even finance teams!) with the aim of raising awareness of MND this June.
As a ‘sneak preview’ here’s a taste of what’s to come from 1 June 2014:
- fundraising events by our researchers (including meerkats!)
- research project updates (such as BioMOx and our zebrafish research)
- job roles of specific people (including Rachel from the International Alliance).
So, to find out more about MND research make sure you visit this blog every day in June for our ‘blog a day’! You can even subscribe (via our subscribe box on the right-hand sidebar) to receive new blog posts straight in your email inbox!
I have lost my voice through MND so very appropriate to raise awareness. In the final days when my voice was poor but understood, it was recorded by the Isle of Wight Radio and on several days presented hourly to raise local awareness. I work where possible with the chairman of our local branch to help make people understand. I will as long as I am able promote awareness.
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