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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

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Charity marks forty years of fighting back against motor neurone disease

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John Macleod set up the Scottish MND Association, now MND Scotland, forty years ago

A charity is marking a milestone anniversary, as it continues to lead the fight against MND.

This week MND Scotland is celebrating Global MND Awareness Day (21 June) and its 40th Anniversary (23 June). The charity is looking back at key achievements over the years and also calling for continued support in the fightback against motor neurone disease (MND).

Forty years ago, police officer John Macleod set up the Scottish MND Association from his living room, two years after he was diagnosed with rapidly progressing terminal illness.

At the time there was no care, support or treatment available in Scotland. Supported by his loving wife Peggy, their family, friends and John’s police colleagues, a new charity was born which aimed to provide support for others going through this frightening disease.

Today, the charity that John and Peggy began supports hundreds of people living with MND. Awareness of MND has never been higher and today MND Scotland invests millions of pounds in cutting-edge MND research.

And forty years of progress has meant that almost everyone living with MND in Scotland can now take part in pioneering clinical trials to find new medical treatments.

Iain McWhirter, MND Scotland’s interim chief executive, said: “This week we are celebrating MND Scotland’s 40th anniversary and the incredible things achieved in that time. Forty years ago there was no care, support or treatment for people with MND in Scotland.

“Today, our team delivers essential support services to hundreds of families across the country. Together, we have created real change at a political level, ensuring people with MND have the right to communication aids, and are fast-tracked for certain benefits. Last year, we invested £1.5 million into launching the biggest MND clinical drug trial in a generation. This means now almost every person in Scotland with MND can take part in a drug trial to find treatments to slow, stop, or reverse the progression of MND.

“We’ve come a long way in 40 years, and none of this would be possible without supporters like you, so thank you from the bottom of our hearts. But we’re not done fighting yet. We need your help to continue the fight, so together we can beat MND.”

Peggy Macleod, co-founder of MND Scotland, said: “Forty years ago, we launched the Scottish MND Association from our living room. When I look at the progress that’s been made in the last few years, it’s totally overwhelming.

“John would be absolutely amazed and proud of what’s been achieved. All he ever wanted was for other people going through MND to have support they need, and to move us towards finding a cure.

“For the first time in my life, I feel that there is hope. That’s why I’m asking you to donate whatever you are able to for the charity’s 40th birthday. With your support we can continue to build incredible things on the foundation John laid all those years ago and bring us closer to a cure for this awful, devastating condition.”

You can donate to MND Scotland online or text CUREMND to 70660 to donate £5.

MND Scotland's journey so far

  • 1981 – Scottish Motor Neurone Disease Association was founded 
  • 1982 – First service was developed and first investment into MND research 
  • 1984 – First nurse was recruited to care for people with MND  
  • 1989 – Moved into first proper headquarters  
  • 1994 – Increased the number of MND nurses in Scotland 
  • 2002 – First drug treatment for MND, Riluzole, becomes available through the NHS 
  • 2009 – Became MND Scotland and adopted current logo
  • 2014 - Ice Bucket Challenge phenomenon 
  • 2015 – Gordon Aikman, MND campaigner, launched Gordon’s Fightback, where he successfully campaigned to double the number of MND nurses and have them funded from the public purse  
  • 2015 - Scottish Charity of the Year winner
  • 2016 – The right to communication aids, free of charge from the NHS, becomes law 
  • 2016 – Gordon Aikman and Lucy Lintott win SCVO Charity Champion award
  • 2017 – Gordon’s Fightback wins People’s Choice award
  • 2018 – First MND drug trial in 20 years 
  • 2018 – Fairer fast-tracking rules for Scottish social security benefits become law  
  • 2019 - joint winners of the SCVO Cracking Campaign award with Marie Cure Scotland
  • 2020 – Launch of the UK's biggest MND drug trial in a generation  



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