It’s the disease that killed dashing actor David Niven and still afflicts physicist Stephen Hawking, author of A Brief History of Time.
Yet so little is known about Motor Neurone Disease that when Ann Murphy’s husband Brian was diagnosed 16 years ago, her first emotion was one of relief: “I thought ‘Thank God it isn’t cancer.’”
Former secretary Ann - now chair of the Luton and South Beds branch of the MND Association, said: “My daughter is a nurse and it was only when we looked on the web that we realised it was a death sentence.
“Brian never acknowledged it. We never talked about dying and I could never raise the issue with him.
“We did everything we could for as long as we could.”
But when the North Thames Gas engineer died 18 months later, the mother-of-two determined to do as much as she could to raise awareness and money for research.
She’s been committed to the local MNDA branch ever since, rising through the ranks to secretary and chair.
It was she who in invited the Association’s new chief executive, Sally Light, to talk to members about the charity’s three year plan to tackle the disease head on, including is first TV ad featuring Nick KNowles of DIY SOS.
Sally, 54, who previously worked for the Royal Hospital for Neuro-Disability, grew up in a Leonard Cheshire home in Leicestershire.
She said: “My mother was the matron and that prompted me to go into nursing. And Leonard Cheshire died of Motor Neurone Disease so I feel as if I’ve come full circle.”
MND affects more than 5,000 people in the UK every year and kills five a day.
Last year the Association launched Delivering our mission: For people with MND and everyone who cares for them. Sally said: “It’s about what we hope to achieve.
“There are three specific areas – care, research, campaigning and awareness.
“Under care comes the work done by local branch association visitors, support groups for patients and their families and providing funding to the NHS for MND care centres.
“Research covers trying to find the cause of the disease. We have a much greater understanding of familial (inherited) MND and know two thirds of the genes responsible.
“Awareness is also a big issue. If we raise our voices loudly enough, we’ll be able to fund lots of research and provide care for those who need it. We have secured more than 16,000 signatories to our MND Charter, including health care professionals, politicians, mayors, all sorts of people.
“But our vision remains the same: A world free from MND.”