Since 1981, MND Scotland has been here for everyone affected by motor neuron disease across Scotland, and we will continue to be here for as long as the MND community needs us.
MND Scotland is here to make time count.
To mark this anniversary, and mark Global MND Awareness Day on 21 June, we are sharing the faces of MND. People who are living with the disease, those affected and, sadly, some of the people we have lost.
For 45 years, we have had the privilege of telling the stories of people affected by MND.
Claire Berry
Mark Ferguson
Moira Gilmour
Michael Cole
Lucy Lintott-Smith
Mert Zorlu
Our history
In 1981, police officer John Macleod founded 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 constituted on 23 June 1981, aiming to provide support for others going through this brutal 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.
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.
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.
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.
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.
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.






