Through their own heart-breaking personal experiences a group of volunteers formed a group to support people affected by MND.
Determined to do something to help counter the isolation John Prince from London placed an appeal in the Evening Standard, asking people affected by MND to contact him with a view to forming a patients’ association. In June 1978 John and his wife Joyce held their first ever meeting at their home.
Meanwhile in Nottingham, Roger Carus, a young father of two small children decided to speak out following the lack of information about the disease that was taking away his life. He was interviewed by the Nottingham Evening Post and readers responded so positively that a preliminary meeting was arranged in February 1979.
His wife Jenny Elston recalls: “When Roger was diagnosed, all he could find was one paragraph about MND at the library. That’s why he got the local paper to take up his story. He knew he wasn’t alone and that there were hundreds of others out there feeling isolated and without even the most basic support. He knew his time was limited but he was determined to do what he could.”
Sadly Roger died soon after that first national meeting – unaware of the role that he has played for people facing MND in the future.
Now we move to Scunthorpe when Peggy Berrie contacted the Nottingham group. Peggy started her own support group in Humberside following the death of her husband Bill.
Another founder member with MND, Paul Betterton also shared his own experience to raise awareness. London Weekend Television featured Paul. His mother Peggy recalls: “Paul knew he needed to raise funds – and being a TV star, even for a few minutes, gave him a big boost during a difficult time.”
On what would become a historic day, the three groups decided to join forces and on the 6 October 1979, the MND Association was born.
The 6 October is a very special day in our history. Therefore we would like to dedicate this day to remember all the friends we have lost to this devastating disease.