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Day 19 of 31 Days SMA Topic: Advocacy and SMA This is @shailynntaylor’s story: My name is Shailynn Taylor and I was diagnosed with type 2 SMA at 18 months old in 1997 in Saskatchewan, Canada. I realized when I hit high school that I was living a life that required fighting. It required advocacy and belief in my own worth and it required unwavering hope that there would be a treatment one day. Due to delays in the approval process for treatment in Canada, my family chose to fundraise for the four loading doses of Spinraza that I required to qualify for Jewelfish, a study of the treatment risdiplam. We knew if we could raise enough money for Spinraza that risdiplam would carry me until the treatment options began to include adults in Canada. This secured my treatment which I have now been on for just over a year, but I couldn’t sit still while so many people I love with SMA were still waiting to have access to treatment. I now sit on the board for Love for Lewiston, a foundation created in memory of Lewiston Olstad who passed away from SMA type 1 just shy of his 6 month birthday. Love for Lewiston now supports Canadians living with SMA with funding for equipment, treatment, therapies and advocates to make life for those living with SMA a little bit easier while bringing awareness to our condition. With the pillars of spreading joy, bringing love and choosing movement, I have been able to continue my advocacy work with an amazing foundation behind me! We will not stop until treatment is accessible to all. Please check out @loveforlewiston if you’re in Canada and you’d like to get involved! #SMAAwarenessMonth #SMAAwareness #31daysofsma2020
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