An Inishowen man, who undertook a gruelling race to both raise money and awareness of Amyloidosis, has handed over a cheque for E21,000 to one of the world’s leading centres on the disease.
Andrew Wallace completed ‘The Race’ in March, which incorporated a 250k course, that includes a 22k run, a 15k kayak, a 96k bike race, a 5k run/walk/scramble up Muckish mountain, followed by a 68k bike race and a 42k run.
Andrew wanted to raise awareness of the devastating disease following the death of his much-loved mother, Eileen in 2015.
He and his family travelled to London recently to present the phenomenal amount of money raised to Professor Sir Mark Pepys FRS FMedSci, Director of the Wolfson Drug Discovery Unit and Hon. Consultant Physician at the National Amyloidosis Centre in the Centre for Amyloidosis and Acute Phase Proteins at the Royal Free Campus, University College London.
The teams within these centres undertake world leading, wide ranging, basic and clinical research on amyloid and amyloidosis, C‑reactive protein and serum amyloid A protein, ‘leading to design and development of new treatments.’
Andrew and his family were told about the work they are undertaking and how the money raised across the North West would be vital in its progression.
Describing Professor Pepys as a ‘genius’ Andrew said that funding for research was so important. He added how he was ‘so proud’ to hand over the money in memory of his mother. Andrew was keen to pay tribute to everyone who had helped him and shown support, especially his family and friends, as well as all those who donated or helped in any way.
The charity has also recently inherited a benefactor who will match any donations, so the money raised has now been turned into €42,000
Andrew described the visit to the centre as ‘very positive, yet very disappointing’ as fabulous treatments are being discovered, but need money to progress.
Professor Pepys told him how, since the amyloid accumulating in the tissues is what causes the clinical problems in amyloidosis, he ‘set out to invent a treatment that would swiftly remove amyloid from the body.’ Amyloid is an abnormal form of one or other of the body’s own proteins. Ongoing formation of more amyloid causes ‘accumulation that eventually damages the structure and thus the function of the affected parts of the body.’
“The aim was to trigger the body’s own processes for removing debris, just like garbage collectors, to specifically target amyloid and destroy it. My invention, made in 2005, was successful.”
It was patented and in 2009, licensed to GlaxoSmithKline, who developed it, alongside the professor and his colleagues. The first clinical trial began in 2013 and was ‘dramatically successful.’
“The treatment safely produced rapid removal of amyloid from various organs. This had never been seen before and it improved the function of the affected organs.”
Unfortunately, in 2018, GSK decided to terminate the programme, something the professor told Andrew was ‘very common’ due to factors that included ongoing review of new drugs and a radical change in target disease portfolios. Prof. Pepys told Andrew he still firmly believes in his approach and ‘remains determined that it should progress for the benefit of amyloidosis patients.’
“I am pursuing different ways forward, with some encouraging results, and I hope that development may be able to restart.”
He added how he and his colleagues were ‘extremely grateful’ for the ‘exceptionally generous donation’ in support of the Amyloidosis Awareness Programme.
Andrew said the research being conducted and the success of the previous programme before its termination shows just how important amyloidosis awareness, research and fundraising is. He added that Prof. Pepys also told him that the majority of Irish patients who visit the clinic are from the west and North West.
“As they say: ‘It’s not a rare disease, just rarely diagnosed’.”
He added: “A lot of very positive stuff is happening right now but still the main issue is diagnosis. As Mark said: ‘All doctors must think Amyloidosis’ when treating any patient, otherwise it’s too late.”