MND Scotland Supporting people affected by Motor Neurone Disease 2016-06-27T11:58:54Z http://www.mndscotland.org.uk/feed/atom/ Niamh Callan <![CDATA[Awareness Week 2016 – What Happened]]> http://www.mndscotland.org.uk/?p=13485 2016-06-27T09:06:49Z 2016-06-27T08:00:56Z read more »]]> In the run up to MND Awareness Week, from 14th – 16th June, we held an exhibition in the Scottish Parliament. This was a great opportunity to highlight our work and the services we provide for people affected by MND, to new and returning MSPs.  We talked about our Awareness Week campaign to #CureMND to party leaders, members of the health committee and MSPs from across the country and all political parties. Following the exhibition, many MSPs tweeted their support for MND Scotland and our campaign, as well as highlighting it in their local press.

MSP Party Leaders Support MND Awareness Week

 

On Monday 20th June, to officially kick the week off, we were joined by people affected by MND, carers, researchers and supporters, at Holyrood Park in Edinburgh, to announce a £450,000 MND Scotland investment into three new research projects. These new projects will:

  1. look at why motor neurones lose their ability to talk to muscles
  2. use state of the art imagery to look at the linkages between cells in the brain
  3. develop a new laboratory model of MND

 

On the day, a new text donation code was also launched, to help us continue funding vital research to take us a step closer to finding a cure. You can still donate £5 by texting CUREMND to 70660. Thanks to everyone who has donated already by text, online or who has been involved in fundraising activities during the week.

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If you missed the launch you can catch up on STV News here at 8 mins 30 secs (this link will expire on Tuesday 28th June). You can also read more about the new research projects we are funding.

hamilton town hallOn Global MND Awareness Day (21st June) communities across Scotland supported MND Awareness Week by lighting local landmark buildings blue, to ‘Shine a Light on MND’:

  • Oran Mor
  • Glasgow Cathedral
  • Arbroath Museum
  • Hamilton Town Hall
  • Bridge Street Paisley
  • Abercorn Bridge
  • Titan Crane
  • Dumfries Council Chambers
  • Saltcoats Town Hall

 

Throughout the week, supporters have been spreading awareness by handing out posters in their local communities, hosting awareness raising events and sharing our messages on social media. To catch up on social media, search on Facebook and Twitter using #CureMND.  On Friday 24th June, Liz Ogg, who has MND, took over the @MNDScotland Twitter account to show our followers what a day in the life of someone with MND can be like.

MND awareness week - Liz Ogg, 67 from Glasgow has MND

 

More people across Scotland with MND were also kind enough to share their personal experiences in the national and local press. This can be a great way to give people an insight into what it is like to have MND. You can also read them here:

 

Will Dawn Abigail

Dawn Morton, 31
Dunfermline

David and Jaqueline Balfour

David Balfour, 42
Crieff

Susan Boag

Susan Boag,52
Forres

Stephen Black and family

Stephen Black, 69
Banchory

Richard Selley

Richard Selley, 62
Perth

John McGaw and Erryne Carruthers 1

John McGaw, 34
Castle Douglas

Iain and Joyce Donachie

Iain Donachie, 61
Stranraer

Ann Irvine

Ann Irvine, 69
Uddingston

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Email MND Scotland

We have had another really successful MND Awareness Week and couldn’t have done it without you.  Let’s keep talking about Motor Neurone Disease and raise awareness every day.  Together we can #CureMND. Thank you all for your support.

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Iain <![CDATA[MND Research Project Awards 2016]]> http://www.mndscotland.org.uk/?p=12249 2016-06-23T15:16:28Z 2016-06-26T08:00:46Z read more »]]> One of the key priorities of MND Scotland is the promotion of research into all aspects of Motor Neurone Disease (MND), and as such we wish to invite applications for our Research Project Awards.

This scheme aims to stimulate and increase high quality research projects into MND.

Grants will be awarded for a limited duration up to a maximum of three years.  For projects lasting longer than one year, continuation funding will be subject to an annual review after submission of a progress report.

Applications for MND Research Project Awards should not exceed £75,000 per annum and £225,000 in total.

Prospective researchers associated with Scottish Institutions, should submit an application by  31st August 2016.

Application Form

Guidance Notes

For further details please contact Craig Stockton on 0141-332-3903 or email craig [dot] stockton [at] mndscotland [dot] org [dot] uk

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Niamh Callan <![CDATA[MND Scotland Unveils £450k Cash Injection for MND Research]]> http://www.mndscotland.org.uk/?p=13435 2016-06-20T14:06:33Z 2016-06-20T13:40:40Z read more »]]> MND_2

MND Scotland has unveiled a major £450,000 investment to fund 3 new Motor Neurone Disease (MND) research projects. At the start of MND Awareness Week the charity is warning that more needs to be done to help find a cure for this terminal illness and they are appealing to the public to help raise more money for MND research. They are also urging the Scottish Government to establish Scotland as a base for clinical trials and lobby the UK government to double funding into MND research.

Today, the charity was joined by people with MND, their carers, researchers and supporters at Holyrood Park to launch a new text donation drive, where they hope 1,000 people will donate £5 to help raise essential funds for MND research.

Gordon Aikman, MND patient, campaigner and MND Scotland Trustee, said, “When I was diagnosed I was shocked that there was no treatment, no cure, nothing. With all the advances in medicine you expect there to be a packet of pills for everything nowadays – but not for MND.

“With the right investment and focus I am confident we can find a cure in Scotland. That’s why I am urging everyone reading this to donate. By doing a little, you can help a lot. Every penny raised during MND Awareness Week will be spent researching a cure.

“It might be too late for me, but we can and we must find a cure for future generations.”

At the event MND Scotland also announced funding towards 3 new MND research projects that will:

  1. look at why motor neurons lose their ability to talk to muscles
  2. use state of the art imagery to look at the linkages between cells in the brain
  3. develop a new laboratory model of MND

 

Craig Stockton, CEO of MND Scotland, said, “MND is a rapidly progressing terminal illness with no effective treatment and no cure. That’s why during MND Awareness Week we want to highlight the importance of research and raise funds to take us a step closer to finding a cure.
“We are delighted that the Scottish Government has agreed to fund 3 MND research PhD studentships, in direct response to MND Scotland campaigning. More can be done, however, including establishing Scotland as a base for MND clinical trials and securing increased UK government funding for MND research.

“Funding MND research is a key priority for MND Scotland. We currently fund 3 research projects in Scotland and are delighted to announce this further £450,000 for an additional 3 projects, but with support we can do more! Join the MND fight today and help us create a world without MND tomorrow.”

Danielle Leighton, MND Clinical Research Fellow, who is part-funded by MND Scotland, said, “It is a very exciting time to be involved in MND research. New discoveries give hope to our research teams and we want people with MND in Scotland to be able to share this hope. I am extremely grateful to everyone who has raised funds for MND Scotland – your continued help and support underpins all our work.”

To donate £5 to MND Scotland text CUREMND to 70660, or donate online.

 

GET INVOLVED IN MND AWARENESS WEEK HERE!

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Niamh Callan <![CDATA[A poem for my mum]]> http://www.mndscotland.org.uk/?p=13461 2016-06-23T08:57:54Z 2016-06-20T08:55:53Z read more »]]> By Linda Pearse

Linda PearseThis year was to be the best year ever,
So many happy times and things to remember.
Sadly not everything could be sweetness and light,
We noticed the slurring and knew something wasn’t right.
So very worried and hopeful we were wrong,
All the while knowing we had to stay strong.

Lots of questions, tests and checks were carried out.
What could it be? Did we want to find out?
Anticipation, then sadness, this couldn’t be true.
These things affected so very few.
In May the news came over a cup of tea,
My mum was diagnosed with MND.

The years to follow, were a struggle for us all
But she was determined and still stood tall.
Everyone around her had to stay strong
Support her, make her smile because life goes on.
But the doctors told us that they were sure,
For Motor Neurone Disease, there is no cure.

Broken hearted and weak, she could have given up
But there was always more room for tea in her cup.
She was a fighter and one tough cookie,
She still loved dancing so we’d help her up for a boogie.
So we helped her as much as we possibly could,
Do all the things we knew that she should.

With holidays and weddings the future was brighter,
It made everyone feel that little bit lighter.
We had plenty of laughs and girly nights in
But some days were dark when frustration set in.
To be without speech, I cannot imagine,
Watching and seeing but keeping silent.

Talking to others about our day,
We never think it will be taken away.
To laugh and eat and move our feet
Are not things we would have called a treat.
The things we do every day
MND takes this all away.

She was strong and brave even through the tears,
It couldn’t have been easy, we all have fears.
It amazed me that she always managed a smile,
Even if only for a little while.
Despite all that she persevered
But her illness decided she only had two years.

The day came when she was taken away
Sudden and quick, we were unprepared,
“Don’t worry mum, you’ll be home tomorrow”
But it wasn’t to be and then came the sorrow.
Three years they had said or maybe five
Why now, so soon? It wasn’t fair!

Life goes on and I stay strong because there is no other option,
To break and crumble or to stumble would mean her fight was in vein.
Time will pass, it always does and people get on with their lives
But the void of losing my mother will never leave my side.
Honest, healthy, kind and caring are exactly what she would want me to be,
For that was her down to a tee and I know she’ll be watching me.

Three years have passed how did that happen?
My life is so different now, as I’m sure you can imagine
But so different in ways I would never have guessed,
That’s just life I suppose, a great big test.
But of one thing I’m sure, life is to short
So get out there and live it, just don’t end up in court!

Every day I remembering her strength and her courage,
It gives me passion for change and the will to make a difference.
So that others don’t have to experience the same
I raise awareness and fundraise; I even jumped out a plane!
It was all worth the pain if others can gain, yes, Kilimanjaro too,
So that one day we can find a cure and say, MND f**k you!

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Niamh Callan <![CDATA[How My Dad Fought Back against Motor Neurone Disease]]> http://www.mndscotland.org.uk/?p=13452 2016-06-22T07:51:30Z 2016-06-18T07:36:02Z read more »]]> John McQuilkenBy Joyce McQuilken

“My father John McQuilken was diagnosed with MND in July 2007, just a month before his 80th birthday, after a few years of increasing leg weakness, falls and broken bones. He died on 26th January 2012.

“With the increased awareness of MND and successes of MND Scotland and their supporters in recent years, I wanted to contribute by also sharing our story. The doubling of MND nurses, the increased awareness and funding gained from the ice bucket challenge and Gordon’s Fightback campaign, and new investments into research – all of this would have been my father’s dream come true.

“Before diagnosis, his mood was low due to failing mobility and inexplicable falls, where his legs would suddenly give way under him, resulting in a broken elbow, leg and hip in the space of a year and a half. When we received the devastating diagnosis, he did not succumb to despair, but was galvanised to fight the disease in whatever way he could. For the next four years he accepted each failing power with equanimity, and was a joy to the home carers for his unfailing courtesy, patience and gentle humour. His love and gratitude to my mother (a former nurse in her early eighties at this time) for the devoted care she gave him, was evident to all.

“Dad had been a journalist, who became a Church of Scotland Minister, and was a good writer and communicator. He decided to put this to good use writing a monthly column which he called the ‘Chaplain’s Letter’, which was published in the local Crieff Magazine. He still wanted to make a contribution to the lives of others despite being virtually housebound. Many of his pieces were inspired by his own experience of disability, or by others who had achieved great things despite disability. He patiently struggled to type these by himself on his laptop which had become a lifeline to him. When he lost the power of his hands, Helen, a volunteer MND befriender from Perth came on Saturday mornings to help him to type his column and send it off in time for the deadline, to send emails to family members, or shop online. He never missed a deadline, and his last column was published just weeks before his death.

“In 2009 he decided to continue his campaign by writing to various public figures (Gordon Brown who was then Prime Minister, and Alastair Darling chancellor, and the Queen to ask for increased research funds to be made available for MND, and for a research department to be created. We still have the replies from the chief scientist in the Scottish Government and from the Department of Health in Westminster, who had been forwarded his letters. He would have been delighted to hear that there is now an MND research fellowship.

“My Dad would have loved the ice bucket challenge and if it had happened in his lifetime he would have signed up and relished it despite his age and disability. He at one stage wanted the RAF to airlift him from Crieff in a helicopter and parachute him into the North Inch in Perth! Given his frail condition at the time, we and his GP managed to persuade him that there might be safer ways to raise funds and awareness – but I think he wanted to make ‘a big splash’ which is why I believe the ice bucket challenge would have delighted him. My husband suggested instead that he write his memoirs. Always an unassuming person, Dad wondered who would read them, but took up the challenge. He managed to complete most of it painstakingly by himself on his laptop, dictating the last few chapters to me. We called it A Triumph of Hope, and I edited it, added some photos and his ‘Chaplains Letters’ and self – published it. We sold it to family and friends and sent the proceeds to MND Scotland. The biggest sacrifice my father made to raise funds was to sell many of the books from his library added to over the years, and his pride and joy. A second hand book seller bought many of them, raising £1000 which we sent to MND Scotland. Dad’s books, especially his art books, were very precious to him and this was a really big gesture on his part.

“Gordon’s Fightback campaign would have been a great inspiration to Dad, who would have enjoyed thinking up creative ways to raise funds, and been inspired by what others did.

“Sadly my father didn’t die at home as we all wanted. My mother, whose dedication to his care was quite remarkable, became seriously ill and was admitted to hospital for emergency surgery, necessitating his emergency admission to a local nursing home. He was in the final stages of his illness by this time, and died in the nursing home, from pneumonia, seven weeks later, just one week after Mum’s discharge from hospital.

“This is now some time ago but in that time there have been so many positive developments in the fight against MND. I want his story, and what he did in a small way, to be recognised. We hope that in some way he added a small drop to what is now a wave of progress in helping the people who are living with this condition today. Every time my Mum hears new positive news about MND support, she derives comfort from the fact that he would have been so pleased, and that he may have contributed in some small way, and remains somehow part of the ongoing story.”

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Susan Webster <![CDATA[International Rights of People with ALS/MND]]> http://www.mndscotland.org.uk/?p=13448 2016-06-21T13:34:49Z 2016-06-15T13:16:56Z read more »]]> MND Scotland is proud to support the International Alliance of ALS/MND Associations’ fundamental rights for people living with ALS/MND worldwide.  Find out more.

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Niamh Callan <![CDATA[Aberdeen Science Centre Raises Awareness of Motor Neurone Disease]]> http://www.mndscotland.org.uk/?p=13236 2016-06-14T17:04:54Z 2016-06-14T17:01:40Z read more »]]> In the run up to MND Awareness Week (20-26 June) Aberdeen Science Centre will be hosting a public engagement event on Saturday 18th June, from 11am to 5pm.

Wilma Catton, who passed away from MND, with her daughters Gemma (l) and Emily (r).

Wilma Catton, who passed away from MND, with her daughters Gemma (l) and Emily (r).

Dr Gemma Catton, STEM Learning Manager at Aberdeen Science Centre, has witnessed how devastating MND is and said “In August 2013, my Mum was diagnosed with MND at the age of 60. Over the next 17 months, she lost the ability to talk and swallow and suffered widespread muscle wastage with physical and respiratory weakness as the disease progressed. Even through such a cruel and devastating illness, my Mum remained so positive and determined and her personality and humour shone through. My wonderful Mum passed away peacefully at home with us in January 2015. She was an incredibly special person and truly was an inspiration to us all.”

MND Scotland will be attending the event to raise awareness of MND and provide information about the services offered by the charity for people affected by MND. Susan Webster, Head of Policy and Campaigns at MND Scotland said “MND Scotland is the only charity funding research and providing care and information for people affected by MND in Scotland. During MND Awareness Week 2016, we will be highlighting the importance of research into this devastating illness and the need to, ultimately, find a cure. It is fantastic that Aberdeen’s Science Centre is hosting this event and we are really looking forward to the day.”

The event will showcase and highlight the cutting edge MND research happening in Scotland with opportunities for visitors to meet scientists from the Euan MacDonald Centre for Motor Neurone Disease Research. Professor Siddharthan Chandran, Director of the Euan MacDonald Centre, said “The mission of the Euan MacDonald Centre is, through research, to improve the lives of people living with MND today with the ultimate aim to beat MND tomorrow. We are very much looking forward to showcasing our work at Aberdeen Science Centre and promoting awareness of MND.”

In addition to an interactive awareness and information area on the main exhibition floor throughout the day, Dr Guy Bewick Senior Lecturer at the University of Aberdeen will facilitate a family friendly show – “It’s just the way you move … it’s electric” – exploring nerves, why they are important and how sometimes things can go wrong, leading to disease such as MND. Dr Guy Bewick, whose research interests explore mechanisms of nerve-muscle connection generation and maintenance, said “Movement is fundamental to all our lives, whether you’re an athlete, or just sitting breathing quietly. Motor neurone disease slowly robs us of these movements. I will show the electrical signals controlling movement and how these techniques in my lab help us search for new drug targets to treat weakness in neuromuscular diseases.”

In advance of the event, Gemma Catton said “I am delighted I am able to use my position at Aberdeen Science Centre to raise awareness of MND and support for the charitable organisations who provide outstanding care and support services and who conduct vital cutting edge research aimed at gaining understanding of this cruel condition and ultimately, hopefully, identifying a treatment and cure.”

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Niamh Callan <![CDATA[Scottish Charity Awards – Oh What a Night!]]> http://www.mndscotland.org.uk/?p=13205 2016-06-11T13:04:45Z 2016-06-11T13:04:26Z read more »]]> Lucy and GordonGordon Aikman (31, Edinburgh) and Lucy Lintott (21, Moray), who both suffer from Motor Neurone Disease (MND), have jointly won the Charity Champion Award at this year’s Scottish Charity Awards. Lucy also left with the People’s Choice Award, which was decided by a public vote.

They were both diagnosed with the rapidly progressing terminal illness MND. At the time Gordon was 29 years old and  Lucy just 19. Since then they have been tirelessly campaigning on behalf of people affected by MND, raising awareness of MND and fundraising to help take us a step closer to finding a cure.

Gordon, MND patient, campaigner and MND Scotland Trustee, said, “I am absolutely delighted to win this award and would like to dedicate it to everybody who is fighting Motor Neurone Disease. I could not have done this alone. I am immensely grateful to everybody who has got behind my campaign, including all of Scotland’s party leaders who have united on this issue. Our next challenge is to ensure pre-election promises are kept, starting with the creation of three research PhDs into MND. The sooner they start, the sooner we can find a cure and start saving lives.”

Lucy said, “I would like to say a huge thank you to my family and friends for supporting me through everything, I know it’s not been easy. Thank you to everyone in my community who’s supported me and kept me going. I hope this shows everyone with MND or a terminal illness that you can still have a life after diagnosis. I’d like to dedicate this award to my friend Spirit who passed away recently, I miss you.”

Craig Stockton, CEO of MND Scotland, said, “We are thrilled that both Gordon and Lucy have won the Charity Champion award at this year’s Scottish Charity Awards. They are both extremely deserving winners and we are so proud that they have been recognised for the outstanding work they have done to improve the lives of  people affected by MND. For Lucy to have also won the People’s Choice award is just incredible.”

Congratulations!

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Niamh Callan <![CDATA[Aberdeenshire mum to run 12 marathons in 12 months]]> http://www.mndscotland.org.uk/?p=13199 2016-06-11T12:53:51Z 2016-06-11T12:53:14Z read more »]]> EDIV3076-20x30Claire Kelly (32), from Alford in Aberdeenshire, has set herself the mammoth challenge of running 12 marathons in 12 months, in memory of her uncle who passed away from Motor Neurone Disease (MND).

Dominic Byrne, from Co.Laois in Ireland, passed away from MND in October 2015. MND is progressive, terminal illness which prevents signals from brain reaching the muscles, causing muscle weakness and wasting. This means someone can lose the ability to walk, eat, speak and breathe unaided.

Claire, who is mum to Lachlan (5), Adam (3) and Jacob (15 months), began running marathons back in December 2009.  She said, “Although I had been sponsored to run, fundraising had never been my specific goal. I had three marathons already under my belt when we found out about my uncle’s diagnosis.

“I thought about it often. I distinctly remember a sunny evening bathing my sons, thinking about my next marathon. Loch Ness Marathon 2013 was coming up the following month and I thought ‘I should put some effort into fundraising and this would go a little way towards helping beat MND.’

“The following Spring, I ran the Edinburgh Marathon and after having a brief hiatus following the birth of my third son I ran Loch Ness Marathon 2015. Over the course of these 3 marathons I raised around £1,500. My long term fundraising plan was to do three marathons in six months (Loch Ness 2015, Paris 2016 and Brighton 2016).

“In October 2015, three weeks after Loch Ness, we lost Domo. Around the time of the funeral, the Dublin Marathon 2016 date was announced. And I thought, ‘wouldn’t this be a great way to keep my fundraising going’. So I signed up. My “Three Marathons in Six Months Challenge” morphed into four in a year.

“Then another genius (yet to be confirmed!) idea struck me – an idea that I’d been toying with but never committed to outside of chat with my husband Chris – 12 marathons in 12 months.

FB_IMG_1464792046453“Well why not? So I’ve decided to run a marathon a month until Dublin 2016 in October. The biggest challenge is finding the time to train and making sure it doesn’t interfere with the time I spend with my kids. I also have my own sports therapy business. So it’s all about juggling my time and lots of coffee.

“I’m now at the half way point, having just finished the Edinburgh Marathon. It will be a fitting tribute to have my final marathon in Ireland. That said, I have found an Ultra-Marathon in November that I like the look of too, so who knows!

“My fundraising goal was £1,212, and it’s already sitting at over £1300, which I am thrilled about.  One of the things I regret is not getting to spend more time with my uncle, so this is something I can do now to give back.”

Iain McWhirter, head of fundraising and volunteering at MND Scotland, said, “We’d like to thank Claire for choosing to support MND Scotland. Running 12 marathons in 12 months is no mean feat and we wish Claire the very best of luck in completing this challenge. The money she raises will go towards helping us continue to support people affected by MND and fund vital research into finding a cure.”

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Niamh Callan <![CDATA[Gordon reaches £500,000 target]]> http://www.mndscotland.org.uk/?p=13185 2016-06-07T09:47:42Z 2016-06-07T09:47:42Z read more »]]> Motor Neurone Disease patient and campaigner Gordon Aikman has raised over HALF A MILLION POUNDS for research into a cure for the condition.  500k

Gordon was diagnosed with the disease two years ago at the age of 29.  Soon after his diagnosis, he founded GordonsFightback.com  to raise funds for research and lobby for better care for people with the condition.

His campaign has received almost 6,000 donations big and small.  A whole series of fundraising events have been behind his success including: high profile comedy gigs, marathons, pub quizzes and bake sales and his monthly column The Motor Neurone Diaries.

Gordon has received numerous accolades including an honorary doctorate from the University of Edinburgh and a British Empire Medal from HM The Queen.

On achieveing such an incredible target, Gordon said “This money will change lives.

”It makes me immensely proud to know that research is happening today, as we speak, that simply would not have been possible without these vital funds.

“To everyone who has helped us reach this incredible milestone: thank you. Together we have brought forward the day we live in a world free from MND.

“It might be too late for me, but by investing in research we can, we must and we will find a cure for future generations.”

Iain McWhirter, Head of Fundraising at MND Scotland, said “We cannot thank Gordon enough for everything he has achieved in the past two years for the MND community.

“Gordon’s Fightback has been a phenomenal success, raising vital awareness of MND and successfully campaigning to help people affected by the disease.

“To have now reached his fundraising target of raising £500,000 for MND Scotland is outstanding. All the money Gordon has raised will go towards helping us continue to find a cure for this devastating illness – together we can make this happen.

“Gordon is a true inspiration to us all and we are proud to have him as an MND Scotland Trustee, campaigner, fundraiser and supporter.”

For more details on Gordon’s story and achievements visit gordonsfightback.com

Gordon is also actively involved in MND Scotland and sits on the Board of Trustees. To keep up with Gordon’s campaign follow him on Twitter @GordonAikman you can also donate on his JustGiving Page.

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