Memories from the beginning
Memories of the beginnings of the MND Association 40 years ago
Paul Betterton was diagnosed with MND in 1976. He had found himself dropping things at first and then developed weakness in his arms followed by difficulties walking and to his and the family’s dismay he was told that he had developed MND, a little known disease that had no treatment and no cure and only one outcome that more than likely would come all too soon. He was 29 years old.
There seemed to be no one who might help and advise let alone understand his condition and the emotional upheaval he was experiencing. His GP’s only advice, based his experiences in the war, was to live from day to day. One glimmer of hope was meeting a forward - thinking occupational therapist who knew of some interest in MND at Charing Cross hospital led by consultant Dr Clifford Rose and contact was made. The next ray of comfort came in an advert which appeared in the evening standard newspaper in 1978.
May I ask any of your readers who suffer from motor neurone disease or who are related to a sufferer from this condition to write to me with a view of forming a patient’s association. JC Prince, Ealing.
At last there were others out there that had similar concerns. Paul attended the first meeting which included Dr Clifford Rose at the London house of Joyce and John Prince. Paul took part in a research at Charing Cross hospital, initially funded by the Old Codgers appeal in the Daily Mirror newspaper.
From this meeting in Ealing grew developments to set up an MND organisation along with similar minded groups which had been formed in Nottingham and Humberside about the same time. The three got together to form the MND Association which was registered as a charity on October 6th 1979 after much hard work. I remember because I was in the room, the memorable day when Joyce Prince waved the letter announcing this news at another meeting now regularly taking place at her house.
Sadly my brother, Paul, died in 1980 aged 33. But by then the volunteers involved worked tirelessly to fundraise for research, widen awareness, provide support and more care for those with MND and their families and Paul and our family did all we could to contribute to this. Paid staff were taken on and the Association grew rapidly. Paul took part in the first TV film to feature someone with MND and the neurologists at Charing Cross hospital. He was a guinea pig for the first mobile arm supports designed at the Nuffield Orthopaedic Centre in Oxford. He wanted things to improve for people like him in the future.
I am sure he would be amazed to see what the Association has achieved over the last 40 years. Although of course there is much more to do, hopefully we may see a world free of MND much closer in the next ten years.
Words by Lesley Ogden