Mother’s Day is a time to reflect on the women who shape our lives through strength, resilience, and love that endures long after they’ve left our side.
For Natalie Lillie, Mother’s Day is about remembering her mom, Joanne – a woman whose life was defined not by ALS, but by courage, generosity, and unwavering devotion to her family.
Joanne was the kind of mother who did whatever it took. After losing her husband while pregnant with her third child, she raised three young children on her own, went back to school, and built a new career to provide for her family. To Natalie, she was more than a mom – she was her role model, her confidante, and her safe place.
After experiencing months of unexplained symptoms and uncertainty came an ALS diagnosis. Like many families, Joanne’s diagnosis came only after a long process of elimination – a tiresome reality for people affected by ALS. Despite the devastation of the diagnosis, Joanne faced ALS with remarkable grace. With support from ALS Canada, she was able to remain in her home during her final months, surrounded by family and familiar comforts. That ability to live and move toward the end of life with dignity is something Natalie and her family remain deeply grateful for.
Since 2009, Natalie has been participating in the ALS Canada Walk to End ALS with Team Sgoilie with the motto, “We will not stop fighting until there is an effective treatment or a cure for ALS.” Years later in 2024, Natalie wanted to pay tribute to her mom in a different, more personal way – highlighting how she lived her life, not just how it ended. Over 12 days leading up to the Walk to End ALS, she created a social media series to honour her mom’s life called Did You Know About Jo? – sharing memories from Joanne’s life alongside facts about ALS — reminding people that behind every statistic is a real person with a story, relationships, and a legacy. Joanne was a daughter, sister, mother, grandmother, colleague, and friend. She was never just a diagnosis.
One of those facts still resonates deeply: approximately 1,000 Canadians die from ALS each year. While there has been meaningful progress in research – with more advances made in the last five years than in previous decades – there is still no cure.
That reality is why the ALS community continues to show up for one another, driven by love, memory, and hope.
This Mother’s Day, Natalie continues to honour her mom through gratitude for the life Joanne lived, the values she passed on, and the family she built. It’s a reminder to hold the people we love close, to tell them what they mean to us while we can, and to keep working toward a future where families facing ALS experience a different reality.
Because a mother’s love doesn’t end – and neither does the commitment to a world free of ALS.