Son of MND Scotland founder joins charity’s Board of Trustees

Donald Macleod, the son of MND Scotland founder John Macleod, has joined the charity’s Board of Trustees, more than 40 years after his father established the charity.

Donald (52) who has spent his career working in public protection, was just 10 years old when his father, John Macleod, was diagnosed with motor neuron disease (MND) in 1981.

His father, who was just 33 years old when he was diagnosed, set up MND Scotland from his living room, two years after he was diagnosed with MND. Supported by his loving wife Peigi, as well as their family and friends, John established a new charity which aimed to provide support for others going through this frightening disease.

Today, MND Scotland has grown to support hundreds of people living with MND across Scotland, as well as funding cutting-edge MND research and pioneering clinical drug trials to identify potential new treatments.

Donald said: “I’m delighted to be joining MND Scotland’s Board of Trustees. Over the last 42 years, I’ve seen how MND Scotland has grown and evolved, thanks to the dedication and selfless acts of so many. I feel a great sense of duty and responsibility to do what I can.

“My parents’ commitment to duty and service in their lives has been an enormous inspiration in my own life too. I’m very proud of what they achieved together, with the help of family and friends, so I’m thrilled to be involved with the team at MND Scotland. There are real challenges ahead, but this is an exciting time to be involved with the charity.”

Reflecting on his father’s MND diagnosis and his work to establish the charity, Donald said: “My father was a police officer and as a young child he was like a hero to me, with his tunic hanging up at the back of the door. He seemed invincible. He was a man who had clear standards, he loved sport and was meticulous, whether that was in his appearance or his cars being spotless! He was a real family man and appeared to be very popular.

“I was ten years old when my father was diagnosed and I witnessed him quickly lose his mobility, his independence and particularly his ability to speak clearly – it was very difficult. When I look back now, it’s heart-breaking to think how frustrating and devastating it was for him. However, when my father showed his mettle to take on the doubters to set up the charity, I saw my dad as I will always remember him, sitting upright in his chair and directing people.

“My father was fobbed off as having a virus, as no one believed someone so young could have MND. He eventually went to England where his diagnosis was confirmed. It was in this period that he became aware of the MND Association in England. My father was frustrated when he learned there was no such support in Scotland. He was challenged in a way that I think he believed was a test of his will, to raise a significant amount of money before the medical professionals would take him seriously. This was something that only inspired him. He had no experience of setting up or being involved in a charity, but that didn’t matter – he was going to do it and he did.

“With the help of my mother, because she was the only one who could understand what he was saying, his focus was on addressing the plight he was facing head-on. He was determined that nobody would go through what he had experienced; being told there was no practical support in Scotland, and nobody was doing any research to find a cure.

“I remember all these people gathering around him. Suddenly the focus was on fundraising and making a difference for people in a similar situation to him. I remember my brother Iain and myself going to receive cheques after charity events, going to church halls and schools where fundraising events were taking place. Going to fiddler’s rallies or spending Saturday evenings unpicking the staples from raffle books.

“The charity suddenly had branches all around the country, from Stornoway to Dumfries, Aberdeen to Edinburgh and many places in between – it was phenomenal. What people must remember this was 1981; no internet, no mobile phones and there were economic challenges and a war in the Falklands. Whilst some things change, we see today that unfortunately others haven’t.

“My father’s ability, despite his physical limitations, to mobilise and lead were and continue to be a real inspiration. My father and mother spent a good bit of time publicising the charity to raise awareness, their Gaelic heritage was important and got a lot of traction in the Western Isles. They were able to muster enough resources to have the first dedicated MND nurse – Muriel Watt. This was real tangible progress, MND Scotland was making a difference.”

Looking to the future of the charity, Donald said: “Although MND Scotland exists because of what my parents did all those years ago, the effect and impact on the Macleod family isn’t unique. MND Scotland was set up all those years ago to give MND patients and their support networks a voice and hope. It is as much as John Macleod’s wish in 1981 to offer that support to those affected, whilst leading the fight in the world of research, as it is mine today that MND is defeated. That must be the focus of everyone around the world involved in MND, united together to rid the world of this most undignifying disease.

“Since my father passed away, many selfless people have given much of their time, talent, and energy to ensure that MND Scotland has gone from strength to strength. Today the charity is at the heart of the worldwide MND community and, as someone described it recently, it’s “punching above its weight”. That is down to the support of the MND community, the drive of those who have gone before and those who continue to support the charity in so many ways.

“Today I feel that there is a real momentum behind our cause and we have real hope. Together, we’ll make time count.”

Adrian Murphy, Chairman of MND Scotland’s Board of Trustees, said: “We are delighted to have Donald joining the Board and the continued commitment and involvement of the Macleod family.

“I look forward to working with Donald to make time count for people living with motor neuron disease across Scotland.”

Read MND Scotland’s Strategy here and help us make time count by making a donation today.