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Friday, 03 February 2017

Motor neurone disease campaigner Gordon Aikman dies at 31

Written by The Press Association

Motor neurone disease (MND) campaigner Gordon Aikman has died aged 31.

Mr Aikman was just 29 and working as director of research for the Better Together side during the 2014 Scottish independence referendum campaign when he was given his diagnosis.

His husband, Joe Pike, announced his death on Twitter saying: "My beautiful husband @GordonAikman has died. We are all heartbroken. He was my best friend, my soulmate and the love of my life."

Following his diagnosis, Mr Aikman formed the Gordon's Fightback campaign, successfully lobbying the First Minister to double the number of MND nurses and fund them through the NHS.

He also raised more than £500,000 for research to help find a cure for the terminal condition.

His family said in a statement: "We are heartbroken. Gordon was beautiful, kind, funny and utterly determined. He achieved more in the few short years after his diagnosis with MND than many of us do in a lifetime.

"Gordon's campaigning and fundraising has truly inspired people, changed lives across Scotland and we are so proud of him. We will miss him terribly."

Mr Aikman received a British Empire Medal in the Queen's Birthday Honours in 2015 and an Honorary Doctorate from the University of Edinburgh in the same year for his work to transform care for people with MND and his efforts to find a cure.

He worked as a senior adviser to the Scottish Labour Party and was Better Together's director of research.

Figures from across the political spectrum have paid tribute to him.

Scottish Labour leader Kezia Dugdale said: "I am utterly bereft. Although we all knew time was precious, Gordon's death comes as a shock.

"I have lost a best friend and the world has lost a man who made it a better place. I will keep Gordon's husband Joe and all his family in my thoughts and prayers. The wedding of Gordon and Joe was one of the happiest days of my life. I will treasure those memories.

"I will miss Gordon's smile, his laugh, his energy, his brilliant dance moves and terrible singing voice, and his positive outlook on life despite the hand he was dealt towards the end. I will miss his advice and I will miss campaigning with him to advance the causes dear to us. But most of all I will miss just spending time with my friend.

"All of us in the Labour Party will be forever grateful for his commitment to our movement, particularly during his time working in the Scottish Parliament and his pivotal role in the Better Together campaign. His death will be mourned by all those who had the pleasure to work alongside him.

"Although we grieve for Gordon, we must not allow our sadness to erase the many happy memories we have of his time with us. To respond to his MND diagnosis by raising more than £500,000 for research into this horrible disease so that others don't have to suffer like he did should inspire us all.

"Gordon's constant determination to do good for others was an antidote to a world so full of fear and anger. I hope that will be his legacy."

Scottish Liberal Democrat leader Wilie Rennie tweeted: "Terribly sad. A generous, determined and gentle man. He has left a great legacy", while Scottish Conservative leader Ruth Davidson tweeted: "So sad this morning to hear of the death of Gordon Aikman, a brave & beautiful man. My thoughts are with his husband @joepike & wider family."

Motor Neurone Disease is a progressive and debilitating disease that attacks the brain and the spinal cord. It leads to weakness and muscle wasting and can affect how patients talk, eat and breathe. There is no cure.

Anyone who would like to support Mr Aikman's campaign can do so at GordonsFightback.com or text MNDS85 £10 to 70070.

'Death sentence bombshell' drove political aide to campaign for MND research

By Hilary Duncanson

The shock diagnosis of motor neurone disease (MND) propelled behind-the-scenes political aide Gordon Aikman to a new role which saw him become one of the country's most formidable charity campaigners and fundraisers.

Mr Aikman was just 29 and working as director of research for the Better Together side during the 2014 Scottish independence referendum campaign when he was given his "death sentence".

A former member of the Scottish gymnastics team as a teenager, he spoke movingly of the bombshell diagnosis which would turn his life upside down in a Scotland on Sunday article in June that year.

Recounting his appointment with a consultant neurologist at Edinburgh's Western General, he wrote: "He asks what I know about MND. 'Very little,' is my honest answer. 'It is a rare, progressive and debilitating disease,' he explains, 'that attacks the brain and spinal cord.'

"I don't believe what he is telling me. I shake my head in disbelief.

"'In time,' he says, 'it will lead to weakness, and muscle wasting', affecting how I walk, talk, eat, drink and breathe.

"How could this be? My symptoms seemed so innocuous. I had noticed my hands feeling numb; I was beginning to struggle with tying shoelaces and buttoning shirts. I thought it was my circulation: something a few blood tests and a pack of pills could sort. How wrong I was.

"'Why me? Why now?' I ask."

Despite being diagnosed with the terminal illness, Mr Aikman decided to continue to work for the "cause" after cutting out commuting and the arduous early starts and late finishes.

But he was also driven by a new passion - fundraising for vital research into the neurodegenerative condition and campaigning for better provisions for those living with the illness.

Through his website GordonsFightback.com, Mr Aikman raised hundreds of thousands of pounds for investment in research.

He also set out a list of seven things he believed the Scottish and UK Governments could do to help find a cure and transform care for MND patients.

Following lobbying by Mr Aikman and others, the Scottish Government doubled the number of specialist MND nurses across Scotland.

MSPs also backed changes to the law that would give people at risk of losing their voice as a result of a medical condition the right to access voice equipment on the NHS.

His charitable work soon received plaudits.

His successful lobbying saw him receive an honorary degree from the University of Edinburgh in the summer of 2015.

In the same year, he scooped a British Empire Medal in the Queen's Birthday Honours list.

Mr Aikman also lived long enough to find out about a research breakthrough funded by the "ice bucket challenge".

Despite being criticised by some as a stunt, the viral campaign raised 115 million US dollars (£87.7 million) and funded six research projects, one of which led to the discovery of a new gene linked to MND.

He also found love and married his partner, broadcast journalist Joe Pike in March 2015.

Writing in his Sunday Times diary, he said: "I know my marriage will be shorter than most. There is no cure for MND. Half of people die within 14 months; I am now eight months in. Does it make it any less worthwhile or meaningful? Of course not. I may be dying but I am lucky: I have found love. For that I am deeply grateful."

He would also write candidly in the column about coming to terms with his own looming death.

"My outlook and priorities have changed," he said.

"I spend more time with friends and family than ever before. I love watching my niece and nephew grow and develop. I live in the moment. I don't put things off. Joy is found in different places. Looming death keeps everything firmly in perspective. Every day I am reminded life is short."

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