Ten years on I’m still doing the job because I very quickly realised that it’s a two-way thing – there are mutual benefits.
I was inspired to use my skills to help fight MND just after my mother died 10 years ago.
When former president Lady Hallifax, who knew I had been a journalist, gently reminded me there was a vacancy for a publicity officer in her branch how could I refuse?
The role in Reading and West Berkshire has been a great challenge and I’d like to think I have made a difference to the level of awareness of this devastating disease.
My job is all about communication – I need to know what is going on and to decide how best to convey that message. Our volunteers are brilliant at telling me about events and the heart-warming stories behind them.
Often the job involves sending a press release to the papers or asking local radio or TV to interview one of our members. We have a newsletter too which I write articles for.
Quite often I’m busy helping to market one of our big events like an open garden, a sponsored walk or a balloon release.
There have been many memorable moments but the highlight was meeting actor Kenneth Branagh when he came to Newbury to introduce a special screening of his film “Theory of Flight”. It was shown as a tribute to my mother and others who had recently died of MND and proved a big fundraiser as well as raising our profile.
Then closely followed meeting the Duchess of York at the RHS Chelsea Flower Show where the branch had its own garden designed by one of our members who sadly did not live to see it win an award.
Ten years on I’m still doing the job because I very quickly realised that it’s a two-way thing – there are mutual benefits. I feel privileged to have met so many inspirational people living with MND along the way and to have been able to tell their brave stories.
Most importantly we also have fun and get satisfaction from working together as 'Team MND'.