From humble beginnings
In 1981, police officer John Macleod set up the Scottish MND Association from his living room, two years after he was diagnosed with motor neuron disease (MND) aged 33.
Supported by his loving wife Peigi, 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, MND Scotland supports hundreds of people living with MND. Awareness of MND has never been higher and we are investing millions of pounds in cutting-edge MND research.
Forty five 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.
Our journey so far
1981
Scottish Motor Neuron Disease Association was founded by PC John Macleod.
1982
First service was developed and our first investment into MND research.
1984
First nurse was recruited to care for people with MND.
1989
Moved into our first official headquarters.
MND Scotland funded the University of Edinburgh, to establish the Scottish MND register which, at the time, was the world’s first MND patient register.
1994
Increased the number of MND nurses in Scotland.
2002
The first drug for MND, Riluzole, becomes available through the NHS.
2009
We change our name to MND Scotland.
2010
MND Scotland funded the development of the Scottish MND register further to create a single Scottish MND clinical assessment tool.
2014
The viral Ice Bucket Challenge phenomenon changed the face of fundraising forever and hugely increased global awareness of MND/ALS.
2015
Gordon Aikman, MND campaigner, launched Gordon’s Fightback, successfully campaigns to double number of MND nurses and ensures they are funded from the public purse instead of by MND Scotland.
Further investment into the Scottish MND register to expand and digitize the registry into a modern clinical audit tool, enabling researchers to audit care outcomes and improve treatment quality. Read more here.
2016
The right to communicate aids, free of charge from the NHS, becomes law.
2018
First MND drug trial in 20 years and fairer fast-tracking rules for Scottish-social security benefits become law.
2020
Launch of UK’s biggest MND drug trial in a generation - MND-SMART with £1.5 million investment from MND Scotland.
2022
We launch an ambitious three-year strategy and new brand identity.
A £4.25 million grant kick starts UK-wide effort to end MND. Read about it here.
TRUST (Terazosin Repurposing Study in ALS) begins, initial funding provided by MND Scotland helped get Terazosin from lab bench to trial. Read more here.
2023
We created our first TV Advert - View it here.
2024
MND Scotland launches LEARN, the Lived Experience and Researcher Network, to connect people with MND and researchers. Read about it here.
2025
The Medicines & Healthcare products Regulatory Agency (MHRA) grants marketing authorisation for tofersen, a new drug for the treatment of SOD1 motor neuron disease (MND). Read more about it here.
2026
MND Scotland celebrates its 45th anniversary.
"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. 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.
Thank you for your support."
– Peigi Macleod, Co-founder of MND Scotland
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