Bernard McNeil cycled across Canada raising awareness of spinal muscular atrophy
photo: Bernard McNeil and his grandson - FACEBOOK
Bernard McNeil cycled across Canada to raise awareness of the cause of spinal muscular atrophy, which his grandson has
"The doctors told us that Malik would not live longer than 2 years," says Bernard McNeil. However, his grandson will celebrate his 10th birthday in November – and he is a child who is “developing really well”, proudly says the 66-year-old man, whose crossing of Canada is coming to an end.
Bernard McNeil got on his horse in New Westminster, near Vancouver, on June 4, with one idea in mind: to raise awareness and funds for the cause of spinal muscular atrophy (SMA), a degenerative disease. SMA is a rare disease, affects the body's motor neurons. Over time, the muscles weaken and shrink, which limits the ability to walk, eat and, ultimately, the ability to breathe.
“If we go back in time, Malik was always sick,” recalls the cycling enthusiast. “When he was young, there was no treatment. It was the arrival of the drug Spinraza, with the push from local Member of the National Assembly, Monsef Derraji, which slows the progression of AS, that allowed little Malik to improve his quality of life.
"When Biogen [pharmaceutical company behind Spinraza] came in and said, 'We've created a treatment, but we need kids for testing,'" Malik was among the first three kids to take part in the study. in Canada. He was among the top 10 in the world.
Since then, “we see that his progress is good”. “He goes to school, he is very efficient and he is a little guy who is very intelligent and playful”, rejoices Bernard McNeil. It was this personal experience in particular that made him aware of the importance of research on SA.
His adventure, the “Tour de SMAlik” – a portmanteau of the English acronym designating the disease (SMA) and the first name of his grandson – allowed him to raise more than $23,000.
As he travelled across the country, Bernard McNeil noticed, depending on the province, inequities in access to care for people with SMA. Iniquities that he deplores and which also motivated him in the challenge he had set himself.
Treatment to slow the progression of SMA is expensive and not available to the same extent everywhere. In Quebec, for example, everyone with the disease has free access again due to the push from the local MNA who advocated for one of his residents who has SMA. This is not the case in Ontario, where only minors are eligible.
Having started 63 days ago, Bernard McNeil only allowed himself six days of rest.
The COVID-19 pandemic then forced him to put his project on hold for a few years. Then, last year, cancer Bernard was delayed another year with the onset of tonsil cancer. Life has finally set him up to follow his dream.
West Island Today will be live in Candiac today to welcome Bernard as he travels through the country. Representatives of the Cure SMA organization will be waiting for him, he will have travelled nearly 5,100 kilometers.
Here is the link to the event taking place today https://www.facebook.com/events/s/arrivee-du-tour-de-smalik-avec/568543385266724/