A man is cycling across Canada to raise awareness and funds for research into a genetic disease for which many patients cannot access treatment.
Bernard McNeil’s grandson Malik suffers from spinal muscular atrophy (SMA), a nerve condition that affects a person’s ability to make voluntary movements.
Due to inactivity, muscles weaken and tighten. The disorder can also affect breathing and swallowing.
The life span of a person born with SMA can be as little as two years.
McNeil began his journey from Vancouver to Montreal on June 4 to raise awareness for Malik and those who cannot access treatment for the condition.
Our kids are covered across Canada, but adults, it’s not, she told Global News during a break from cycling in Winnipeg.
It’s a shame.
There are three approved treatments for SMA in Canada and all have been shown to be successful in managing symptoms, but the parameters for accessing them are limiting.
In Saskatchewan and Quebec, treatment is available to everyone, but elsewhere in Canada, only those under 25 or unable to walk are eligible for treatment. Others were left without.
Jeremy Bray has tried to access one of the approved treatments by requesting an exception and working with pediatric neurologists, to no avail.
To be honest, I never really thought I’d have access to treatment, he said.
The National Institutes of Health estimates that there are between 700 and 2,140 cases of SMA nationwide, with about 35 new cases each year.
Bray was diagnosed with SMA at 18 months. Now 28, his level of mobility is limited to a finger on his left hand that helps him navigate his world: He works as a data consultant for the Louis Riel School Division, scrolls his smartphone and steers his chair a motorized wheels.
If his condition worsens and he loses the last part of his mobility, he loses the rest of his independence.
It really is kind of a ticking clock for people like me, she said. The progression of our disease will continue to take away our free will and independence, and many of us cannot wait too long for our normalcy to be taken away from us.
Susi Vander Wyk, executive director of Cure SMA Canada, said the treatments have saved countless lives.
Before the treatments came, I sent out newly diagnosed packages (to parents) and most of the time followed up within two years with an end of life package for the family, she said.
From the time of treatment I almost never send an end-of-life parcel.
The treatment, which includes injectables, pediatric-specific treatment, and oral treatment, can improve lung function, reduce reliance on home care supports, reduce time spent in hospital, and enable adults to maintain stable employment.
Vander Wyk said the province won’t increase access to SMA treatments because the data doesn’t support it, but when the organization provides its own research in its favor, the government still refuses.
Before that we only had the disease. But now we have the disease and we know that a government does not value our lives.
SMA needs access to care in general, lives depend on it.
The province was unavailable for comment on Sunday.
In 35 days on the road so far, McNeil has raised nearly $10,000 of his $20,000 goal to fund research into the disease and possible treatments.
While tired from the ride, the lifelong cyclist said it was worth it.
When I think about what they (the patients) are carrying on their shoulders, the weight of being limited gives me strength.
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