Yesterday was Global MND Awareness Day, and dinner was held last night in memory of MND campaigner Gordon Aikman to raise funds for MND Scotland. A host of celebrities came together in the fight against Motor Neurone Disease at the “Gordon’s Fightback Dinner”, a tribute to the inspirational Gordon Aikman.
The night also saw the first presentation of the “Fightback Spirit” award, which recognises someone’s inspirational contribution to the fightback against MND. This year the award was presented to Lucy Lintott, the youngest person in Scotland with MND.
Lucy (24), from Moray, was diagnosed with MND when she was just 19 years old. In the face of a devastating diagnosis Lucy decided to live her life to fullest, and her positive attitude and drive to raise awareness and funds has touched many.
Lucy said, “I’m honoured to get the Fightback Spirit award. Gordon and I have received many awards together over the years, so getting one named in memory of him, is very surreal.”
Lawrence Cowan, Chair of MND Scotland and close friend of Gordon Aikman’s said: “Lucy is an inspiration to us all. Her approach to life, the way she is helping raise awareness of the condition and her fundraising are just incredible.
“Lucy has raised over £170,000 to support people and fund a cure for MND. The way she has also opened up her life to raise awareness of the condition through the media and in her recent documentary “MND and
22-year-old me” is beyond courageous.
“She is a leading light of the fightback against MND and it is an absolute honour to present her with this award.”
Doddie Weir, who presented Lucy with the award, and hosted the live auction at Prestonfield House, said “It is fantastic to meet Lucy, something I have been wanting to do since watching her incredibly honest and moving documentary about her life with MND.
“Lucy has taken a devastating diagnosis and turned it into a positive – her fundraising efforts and work to educate people about Motor Neurone Disease is inspiring and an example to us all. I am humbled and delighted to present her with this award, while also recognising the huge contribution Gordon made to the fight against this horrendous disease.”
Gordon Aikman’s husband Joe Pike, said: “Gordon really cared about Lucy. He found strength in her fight against MND. They were both living with the disease at the same time and Gordon loved Lucy’s fun-loving spirit, her humour and her determination to make most of every moment.
“She inspires me, everyone involved in the Gordon’s Fightback campaign and so many others to keep making a difference. Lucy richly deserves this award.”
Researchers in Lothian giving voice to MND sufferers
MND Scotland has committed to having a research portfolio worth £2.4 million by 2020, with eight projects currently underway and a call for new research projects also live at the moment.
Much of this innovative research is taking place in Lothian at the University of Edinburgh.
Clinical Research, based at the Anne Rowling Regenerative Neurology Clinic, is delivering collaborative clinical projects including to see what learning can be found in research around diseases including MND.
The clinic carries out a range of research including projects such as Speak Unique Voicebank Research, where patients voices are recorded so that their voice machine will talk with their voice once they lose their own speech.
The Voice Bank initiative, using informatics to provide personalised synthetic voices for use in communication aids has already been a great success.
This Anne Rowling Clinic is an interdisciplinary clinic that also hosts linked and parallel activity in other serious neurological conditions.
Miles Briggs is a member of the Cross-Party Group in the Scottish Parliament on Rare, Genetic and Undiagnosed Conditions.
Scottish Conservative Health Spokesman Miles Briggs said: “Lothian researchers are at the forefront of international research on MND and we should all be rightly proud that they are leading the way in this groundbreaking research.
“The innovative Voice Bank are still looking for key regional voices and I am pleased MSPs and Parliament staff have taken up the recent call for more voice donors to come forward.
“I again welcome today’s debate as part of MND Awareness Week and I wish all involved a successful week which raises even more money to support people with MND and their families and that we can continue to invest in the research that one day will lead to a cure for this devastating condition.”
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