A Kelowna woman known for her ALS advocacy has passed away.
Sara McDonald founded the not-for-profit charity Cool Arts in 2003.
The local artist was diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's disease, in January 2020.
She fought for better access to treatment for ALS patients, and in 2021 was granted an exemption under the Controlled Drugs and Substances Act, to access psilocybin (magic mushrooms), the first Canadian with ALS to receive such an exemption.
She wrote about her experiences with the illness in a blog post.
The last entry was Jan. 6, 2022, when she mused about her bucket list, saying she felt a bit pressured to come up with one after her diagnosis.
“...maybe for someone that reads a lot, a bucket list might be about the sense of accomplishment of finishing certain books. For a person that loves to work with their hands, maybe it would be about projects that they would love to accomplish in the garden or workshop or studio,” wrote McDonald.
Her obituary notes Sara lived with ALS with dignity, grace and courage and that despite declining health, she fought, along with other patient-advocates, for greater attention to ALS care. It says she passed away peacefully at the time and place of her choosing.
On Twitter, ALS Action Canada posted, “Our friend and fellow ALS advocate, Sara McDonald, passed away last week at a time and place of her choosing. Sara was a mom to 4 and a grandma.”
Several people have left messages of condolence including one who writes, “Sara was such an amazing ALS fighter and advocate and her voice was heard even when it wasn't heard. She was able to raise awareness and a lot of money for ALS by sharing her story and her journey through news interviews, social media and of course her always inspirational blog posts. We were proud to have the opportunity to get to know her, to fight alongside her, and to be motivated by her in our own efforts to raise awareness of this horrific disease. Sara was a beacon of courage in a relentless storm and she will always be remembered by us as someone who touched our lives and our hearts. You will be missed by many including your ALS family. Rest In Peace.”
