A MEDICAL research foundation based in Galicia has set itself the ambitious goal of creating a cure for Parkinson's Disease at 10% of the cost of similar therapies under development in the USA and about a third of the sum involved in another in the UK.
A researcher in a medical science laboratory (photo: MaRia Rb on Facebook)
Alberto Amil, 49, is one of around 160,000 people in Spain diagnosed with Parkinson's, one of the seven million or so on the planet – about one in every 1,000 of the earth's inhabitants – and the only known case in the world of a person with Parkinson's and Amyotrophic Lateral Sclerosis (ALS), otherwise known as motor neurone disease.
He and two doctors set up the Curemos el Párkinson ('Let's Cure Parkinson's') Foundation in a bid to find a way of reversing the condition using gene repair therapy.
The married father of three says: “My TBK1 gene is affected – a gene that tends to cause ALS or dementia more than Parkinson's, but which, in my case, gave me both, although the ALS comes on more slowly.”
His first symptoms came on about a decade ago – his left hand started trembling slightly – but for a long while, he was able to live a 'more or less normal life'.
Alberto, a dynamic young businessman, had set up a string of national and international companies and was on 14 boards of directors – but five years ago, his symptoms started to become more life-limiting.
“I sold my companies, because at the time, I was scared I wouldn't be able to run them properly,” he explains.
He went from walking with a stick to needing a walking frame and then, by the beginning of 2020, to using a wheelchair – just months after his ALS diagnosis came on top of his existing one of Parkinson's.
Alberto had joined up with the neurologist who had diagnosed his first condition, Dr Diego Santos, in a research project involving over 600 patients, 140 of his colleagues and 40 Spanish hospitals.
“But it was only about how to improve our quality of life, not to cure us,” says Alberto.
Now chairman of the Foundation which proclaims, in its name, to be determined to do the latter – and with other genetic and neuro-degenerative conditions – Alberto said he 'came across' the idea of gene-repair therapy about nine month ago.
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