You meet some amazing people!
Lesley Ogden
My brother, Paul Betterton, developed MND at the age of 29 in 1976. I got involved along with our parents in supporting him at a time when there was very little help and few people knew much about MND.
Our family were founder members of a group set up by Joyce and John Prince in London that joined up with the groups in Nottingham and the North East to form an Association, which achieved charitable status in 1979...., and so the Motor Neurone Disease Association was born.
Paul featured in one of the first television programmes about MND and was keen to do what he could to publicise the condition and took part in early research. My father went on to become a member of the National Executive Committee, the equivalent of the board of trustees today, as I did myself in the 1980s when I was a member of the Manchester Branch; we were also members of local committees much involved with fundraising and publicity.
At this time the David Niven campaign was launched which raised the profile of the Association considerably. My mother and father helped to set up the Sussex branches before they moved to join my growing family now in Oxfordshire. By a strange coincidence Joyce Prince had become chair of the new Oxfordshire Branch that also included another well-known Association volunteer, Jim Tew - a former chair of the Association and founder of the International Symposium - who had also been a member of the original London group.
Although I have been a member and supporter of the Association for 30 years and have always taken great interest and pride in its successful development, I have had periods when I have not been as active as I am now as support group co-ordinator, publicity person on the committee and an Association Visitor but I know that volunteering in any way you can brings great rewards and satisfaction and can make such a difference to people living with MND.
You meet some amazing people!
