I took the day and traveled to Toronto with Louise Smith to attend a press conference and join in on a walk for SMA.
You may know that we have been fundraising through the Rebecca Run for Spinal Muscular Atrophy for 18 years to find a cure for spinal muscular atrophy. Glenis and I have been volunteering with race director Louise Smith since the race was in the planning stage.
Although a cure hasn’t been found, a drug that can help slow the progression and in some cases give back abilities has been found and is in production. Although extremely expensive, to the point that basically no family can afford it, 43 countries and the province of Quebec have approved it for all SMA patients. Canada with the exception of Quebec has said no to all SMA patients. Only patients 12 years old and under who have never walked or are not intubated qualify. That leaves out children over the age of 12 and adults without access to this life altering, potentially life saving drug.
I saw the pain in the parents’ eyes as they pleaded for their older children. These young adults worry about their parents just as their parents worry about them. To hear the university students explain how they manage living on their own, manage classes and manage their disability was astounding. How can Canada make a decision that will make it more difficult for them than it already is? Is it the cost? Are we not all worthy?
I can’t comprehend Canada’s decision, but I will be there to help wherever I can to convince them to change their decision. Join us.
The Rebecca Run for Spinal Muscular Atrophy is on July 6th at Fairy Lake in Newmarket, Ontario. I hope I see you there.
Update: please sign. https://www.change.org/p/spinraza-for-all-canadians-with-sma