Mother and daughter caregiving team reach out with love and compassion

When Emma and Tom Belen decided to share the tragic news of Tom’s ALS diagnosis with their two daughters at a Sunday lunch gathering in March 2011, their eldest daughter, Stephanie, surprised them both. She decided to announce her pregnancy even though she and her husband hadn’t planned on telling anyone before the end of […]

Healing through giving: A daughter’s story

It was Noella LeBlanc’s father who was diagnosed with ALS, but she believes the disease was responsible for her mother’s death, too. “The two of them had been joined at the hip for nearly 50 years, raising their children and enjoying travel in their retirement years” Noella says of her parents before the diagnosis. “My […]

Enduring love of a ‘forever husband’ inspires hope

ALS took the love of her life in September 2017, but Debbie Caswell’s love for her husband Jamie is still the light that guides her. This June Awareness Month marks their first wedding anniversary. At the time of the ceremony, Jamie had already lost the ability to eat, speak, and breathe without the help of […]

A Caregiver’s Story, Part 3: Looking forward, looking back

Jess Gustafson says she will never forget the first time she met Lianne, the ALS Canada Regional Manager in her area. Lianne came and sat with Jess and her husband, Alan, on their front porch to talk to them about what they could expect following the shocking news confirming Alan’s ALS diagnosis. Lianne provided informed […]

A Caregiver’s Story, Part 2: Speaking out against the helplessness of ALS

It is difficult to stay positive in the face of an ALS diagnosis. Jess Gustafson says she and her husband, Alan, found hope and courage by supporting each other with a love that deepened over the course of Alan’s illness. She was also sustained by the outpouring of support offered by their wide circle of […]

A Caregiver’s Story, Part 1: Championing the ALS cause

Caring for a loved one with ALS is a challenging task that requires time, energy and emotional resilience, and caregivers give so much of themselves — time and time again. Even after a loved one passes away, caregivers continue to give in many ways. And for everything that ALS takes, love is the one thing […]

How it feels knowing your daughter has ALS

Peter Sharman and his wife, Louise, were on a cruise in the Black Sea when they received the call. Their daughter, Carol, had just been diagnosed with ALS and they were thousands of miles away. Immediately running to the computer, Peter looked up those three letters to see if what he had heard was true […]

Radicava (edaravone): Make your voice heard

Updated July 18, 2018 The Canadian Agency for Drugs and Technologies in Health (CADTH) recently posted an open call for patient input on Radicava (edaravone). This is an additional step along the approval and affordability pathway for the drug, which is currently being reviewed by Health Canada. In response to CADTH’s call for patient input, […]

Giving back to stop ALS from taking more

According to Brian Heaney, the Kitchener/Waterloo WALK for ALS is the “best day of the year.” As a dedicated participant attending the WALK for his eighth year in a row, Brian has a robust understanding of what the WALK for ALS in his community is all about – and he looks forward to attending with […]

ALS Research Update, June 2018

ALS research is at a time of unprecedented advancement. Our biggest hope is to stop ALS from stealing dreams, abilities, and lives – and researchers are closer than they’ve ever been to making this a reality. With such unprecedented momentum, we can’t afford to be stagnant. Give now to stop ALS from taking. This ALS […]

Long-time altruist lends his voice to ALS cause

Throughout his career, Vincent Quinn has worked with people living with disabilities, tended to social justice issues for homeless youth and adults, and facilitated support groups for people who have lost someone to suicide. Today, he volunteers his time to the Barrie WALK for ALS and the Board of Directors of ALS Canada, where he […]

Acting against everything that ALS takes

June is ALS Awareness Month in Canada. And while we are only four days in, already there has been lots of momentum behind our shared cause: MPs have made statements in the House of Commons; landmarks have been lit in purple; WALK for ALS events are in full swing in communities across the country. Awareness […]