Paul Cardwell met MND campaigner Gordon Aikman, who was recognised as a Charity Champion at this year's Scottish Charity Awards

Diagnosed with the devastating illness motor neurone disease (MND) at aged 29 in 2014, political campaigner Gordon Aikman is determined to fight back and to live life to the full.

After being told by his doctor he could have under two years left to live, the Edinburgh University graduate, who grew up in Kirkcaldy, launched a major campaign, Gordon's Fightback, to raise awareness of MND and funds for research.

Last week Gordon picked up the latest of a string of awards for his work over the last few years when he was named Charity Champion at the Scottish Charity Awards alongside fellow MND campaigner Lucy Lintott.

You become more grateful for the smaller things such as a nice walk around the park, or a beautiful sunny day where you feel the sun on your skin

Catching up with him in his Edinburgh flat, which has been modified to accommodate the powered wheelchair he now uses, Gordon explained his campaign was born out of anger more than anything else.

“I couldn’t believe what the doctor was saying to me,” he said.

“I couldn’t believe that in 2014 there could be no treatment, no cure, nothing. You expect there to be a cure for everything these days. We’re making massive progress on all of the big killers but not when it comes to the brain and neurological condition and in particular MND.

“I sat around the kitchen table with a group of pals just weeks after my diagnosis and they became my campaign team. We were angry that there was no cure, there was nothing we could do so we just thought, right let’s start lobbying.

“For me I was just desperately trying to turn something that was a really negative thing happening to me personally in to something hopefully positive for other people.”

So far Gordon’s campaigning has raised more than £500,000 for MND research and helped keep the condition high on the political agenda. Thanks to his lobbying, last year the Scottish Government agreed to double the number of specialist MND nurses and also to starting fund them, saving the charity MND Scotland thousands.

He has featured in a BBC television documentary and written columns in national newspapers such as Scotland on Sunday and The Sunday Times, helping others gain a better understanding of what it is like to live with the condition.

Equipment that allows people diagnosed with MND to record their voice so it can be used to help them communicate if they lose it will soon be made available on the NHS, and the SNP also included a pledge to fund three MND research PHDs in its manifesto.

Gordon and MND Scotland also lobbied for a living wage for care workers, which First Minister Nicola Sturgeon announced in February, and Gordon is currently lobbying the UK parliament to double MND research funding.

“Research one day will find us a cure,” insists Gordon. “I don’t think it’s a question of if, I think it’s a question of when.

“I treat my campaign like a bit of a job, it gives me a bit of focus Monday to Friday from nine until five.

“It’s very easy to become a full-time patient because there are so many people that want to come and see you, talk to you, assess you, test you. MND is only a tiny part of my life. I refuse to let it define me.”

Proving that very point we discuss wider politics. After graduating from university, Gordon worked for the Scottish Labour Party before taking on the role of director of research for the Better Together campaign.

He wants Hillary Clinton to be the next US president and says she should sort out the country’s gun laws on her first day in post. As a gay man, who married his husband, political journalist Joe Pike, in 2015, the recent Orlando shootings are particularly horrifying to him. He describes them as the most serious attack on the LGBT community since the Holocaust.

While I’ve still got the energy I am going to keep on fighting with the campaign, the fundraising and just trying to do everything that I can to bring forward the day we find the cure

We move on to food. He loves Italian and curry but his favourite is sushi.

Gordon is really a positive person, who isn't letting his diagnosis get in the way of enjoying life. In fact, he credits it with helping him live a fuller life.

Gone are the long working days, now he spends more time than ever with his family who still live in Fife.

Most days he manages to get out and about. He loves spending time with his niece Ailidh and racing his nephew Murray – himself in his wheelchair and Murray on his bike.

“I think the diagnosis has changed my outlook on life,” he explains. “I think you become more grateful for the smaller things such as a nice walk around the park, or a beautiful sunny day where you feel the sun on your skin.

“I’ve done a lot since I got my diagnosis. In many ways it feels as if life has been on fast forward. There is a whole new intensity to everything. It’s really helped me get my life back in order, prioritising things that really matter.

“Despite what is a horrible diagnosis there has been way more happiness than sadness.”

Gordon isn’t in denial, he knows MND is a horrible disease and he knows it will only get more difficult. In the last year, he has gone from having carers visit three or four times a week to three or four times a day.

“They do everything for me,” he says. “They get me up out of bed, they wash, dress, feed and cook for me.

“The big thing I’m struggling with at the moment is my breathing. I have to use a ventilator every night and I use it more and more throughout the day.

“I’ve still got a bit of the use of my hands. I can still bash away at a computer, very slowly send a text message and buzz around in my wheelchair. When I can’t do that that will be hard to cope with.”

His attitude is that he is no different from anyone else. Everyone will die one day, the only difference with him is he knows what it will be from. There is no point in dwelling on something you can’t change, he says.

Finally, in what appears to be typical for Gordon he ends our chat on a positive note.

“Despite everything, I have outlived expectations – half the people die within 14 months of being diagnosed but I am still here after two years.” he says.

“I am quite optimistic about the future. I’m not going anywhere anytime quick.

“While I’ve still got the energy I am going to keep on fighting with the campaign, the fundraising and just trying to do everything that I can in my power to bring forward the day we find the cure.”

This week is MND Awareness Week. Find out what you can do to help via MND Scotland.