Coronavirus measures halt Brian’s ‘cure’ trial
Oban’s Brian MacDonald is ‘gutted’ coronavirus has put a halt on the largest ever trial of drugs tackling motor neurone disease.
The retired firefighter, diagnosed last year with the devastating condition, had signed up with the likes of rugby legend Doddie Weir to take part in it.
He had been given April 6 as a starting date but was given the heartbreaking news last week that recruiting for the MND-SMART programme had been paused and they would be delaying the opening of trial centres.
The difficult decision was also to make sure all medical and nursing staff involved in the trial would now be available to be redeployed in the fight against coronavirus.
Brian, whose health is deteriorating and who now needs a hoist to get in and out of bed, said coronavirus was ‘a nightmare’.
‘I thought it was magic when I heard back from the trial and got a date in April. It was something to look forward to but now it’s been cancelled. To say I’m gutted is an understatement,’ he told The Oban Times. Brian has opted to stay registered for the trial and hopes it will restart as soon as possible.
The 42-year-old, who officially retired earlier this year from the fire service after 13 years of life-saving service in Glasgow, said taking part in it would have been ‘massive’ for himself and others with the potential of finding a cure.
In the past fortnight Brian has also been recording a voice-bank, funded by the Fire Fighters Charity.
‘If the worst case scenario happens and I lose my voice, I will have it banked so I can speak through a computer. Here’s hoping it won’t come to that,’ added Brian, who moved into a one-level cottage run by Scottish charity Bield just before Christmas.
MND causes muscle wasting and loss of nerve cells that control movement, speech and breathing.
Hundreds of MND patients were due to take part in the MND-SMART clinical trial and it was planned the first participants would be seen in Edinburgh at the Anne Rowling Regenerative
Neurology Clinic with other clinics across the UK joining during the year.
The trial had been developed to find effective medicines more quickly, allowing more than one treatment to be tested at the same time and meaning patients were more likely to receive an active drug.
As well as trying out new drugs, medications already licensed for other conditions such as anxiety, depression or Alzheimer’s were to be tested.
The clinical trial was a collaboration between University College London, the University of Warwick and the Euan MacDonald Centre for MND Research at the University of Edinburgh.
Funding had come from the Euan MacDonald Centre, MND Scotland and the My Name’5 Doddie Foundation.
‘It was something to look forward to. To say I’m gutted is an under statement.’