Wrapping up ALS Awareness Month

ALS Awareness Month is all about telling stories. Over the course of the month of June, people and families affected by ALS shared their personal stories about why they gave and who they gave for. On June 27, 2018, Dr. David Taylor, VP of Research at ALS Canada was joined by caregiver turned volunteer, Beth Robertson, […]

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 […]

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 […]

Seizing Today by Planning for Tomorrow

As a former business analyst, James is accustomed to planning for the future. He has lived with ALS officially since 2013, but his doctors believe he has had ALS for over 20 years. James has an exceptionally slow progression of the disease, which has given him time to do what he does best: plan for […]

A story of unwavering positivity in the face of ALS

When Shelley first started to notice a change in her gait, she had no idea that an ALS diagnosis was on the horizon. In fact, up until her neurologist confirmed the diagnosis in early 2016, Shelley didn’t even know what ALS was. For many people and families living with ALS, the diagnosis can come as […]

MPs give ALS a voice in Parliament

In 2016, a group of parliamentarians and senators from all major political parties united to bring awareness to the challenges facing Canadians living with ALS. Chaired by Francis Drouin, MP for Glengarry-Prescott-Russell, the creation of the ALS Caucus on Parliament Hill was a significant achievement, and ALS Canada is proud to have played a role […]

Awareness Month Round-Up

As the month of June wraps up, so too does ALS Awareness Month. Over the past several weeks, ALS Canada has invited you to #SeizeTodayALS by telling us how you have chosen to find joy and laughter in every day, despite the challenges of living with ALS. We have been privileged to share the stories […]

Caring for a loved one with ALS brings poignant new perspectives

A week before the annual WALK for ALS in his community, Susan Peacock’s husband, Jeff, spent a few hours on his computer composing a message to post on Facebook using eye gaze software. The technology allows him to communicate now that he can no longer speak, but, as Susan is quick to point out, it […]

The Power of Love: “As long as we’re together, everything will be alright”

Like most couples, Denis and Tom had dreams for their future together. They met 25 years ago in Philadelphia, and when Denis accepted a new position in Toronto, Tom quit his job and moved to a foreign city to be with him. Tom found a job in his field, became a Canadian in 2000 and […]

Building “a beautiful life” with dignity and respect

Husband. Partner. Lifelong friend. Grace had known Randy since he was a teenager, and over time he had become all of these things to her. The couple had been married for almost 50 years before Randy passed away from ALS in March 2016, and Grace recounts that they had built “a beautiful life” together in […]

How a grandson learned to cherish every moment

When Fabio talks about his grandmother Giuseppina, the love and respect he has for her is unmistakable. The woman he describes is warm, fun-spirited and hard-working; a woman who would do anything for the ones she loves. As the eldest of eight grandchildren, Fabio shared a unique bond with Giuseppina, who passed away earlier this […]

From grief to hope: how my grandfather’s ALS diagnosis gave me purpose

From a very young age, my grandfather and I had a special connection. I remember as a young girl, he and my grandmother would go to Portugal for six months at a time. When they returned, I refused to leave his side and would spend hours just staring up at him, thinking how lucky I […]

“I am so much more than my physical abilities”

The only muscles Jeff can fully control are behind his eyes. He lives with ALS, but that hasn’t stopped him from staying fully engaged in life and finding purpose in helping others. That’s the way he’s always been, says his wife, Darlene, who has known him since high school. Nowadays, everything takes extra time, but […]

A Daughter’s Resolution to Honour her Father

If you were to have asked Kimberley a couple years ago the definition of Amyotrophic Lateral Sclerosis, she would have admitted that she did not know. Medically speaking, the word “lateral” identifies the area where nerve cells in the spinal cord that nourish the muscles are located. As nerve cells die, the muscles receive no […]

Finding Comfort in Creativity

When life hands you an ALS diagnosis, the fear of the unknown can often prevent you from embracing the present. This is something Mary-Anne experienced first-hand three years ago, when she was diagnosed with ALS. During a vacation in Puerto Vallarta, Mexico in 2012, on her way to a yoga class, Mary-Anne tripped and fell […]

Eddy is Living Life on his Terms

When Eddy was diagnosed with ALS in 1992, he was given three to five years to live. His symptoms began with a weakness in his left hand that gradually progressed throughout his body. “Over the next 15 months I was unable to skate, run the length of a squash court without falling, and was constantly […]

Seizing Today with Passion and Humour

Judy is the kind of woman who can make you smile in any situation. With a zest for life, unwavering positivity and a witty sense of humour, Judy is an inspiration for what it means to seize today. At first glance, you wouldn’t know that Judy has ALS. At the age of 64, she is […]

Carol: Living, Loving and Laughing Today

Diagnosed with ALS in September 2013 at the age of 41, Carol has surpassed the two to three year life expectancy that was originally given to her by her neurologist. Since then, she has struggled with degenerating muscle function every day – but she refuses to let that stop her. When she first received her […]

A Walk for Remembrance and Awareness

Last month, John Scarborough and his two brothers completed their “Long Walk Home.” The 459km walk was a way to honour their sister and John’s first wife who both died of cancer, and to remember Rita, John’s second wife who died with ALS a year ago. The brothers set out in Toronto from the home […]

“Life is beautiful:” Seizing Today with love, support and adventure

In his lifetime, Jamie has climbed the Swiss Alps, bungee jumped, skydived, white water rafted and cave climbed. He has gone on a balloon ride in Estonia, taken a cruise to the Caribbean, done a rainforest canopy tour in St. Lucia and proposed to his best friend. Since his ALS diagnosis in 2016, he has […]

A positive mental attitude continues to drive Don’s daily workout

Oftentimes, significant life struggles – like an ALS diagnosis – bring about a reassessment and shift in perspective. For Don, living with ALS means readjusting his physical goals, but his attitude about life is the same as it has always been. He calls it “PMA” (positive mental attitude), a term that embodies Don’s optimism. Don […]

Losing mobility never stopped Tim from walking through life with a smile

Tim was always actively engaged in life. He loved his work, coaching and playing hockey, riding his bike, and spending time with his circle of family and friends. ALS took away his ability to move. It forced him to make huge adjustments but living with the disease never changed the way he approached life. Just […]

John: Getting by with a little help from his friends

John has always had a positive outlook on life. For many of those living with ALS, the diagnosis can often bring a shift in perspective in what is meaningful and important. For John, it simply reaffirmed the way he has always chosen to live. John is a 63 year-old retired animal and agriculture research worker […]

There’s no better time than right now to seize today

Receiving an ALS diagnosis is overwhelming, and many people and families living with the disease will tell you its realities are devastating. ALS can take away your mobility, your ability to speak and laugh, your strength and your ability to eat and drink. What it cannot take away is the relationships, love and personal connections […]

June is ALS awareness month

Thirty remarkable days. Thirty inspirational stories. Thirty chances to seize the days. That’s what ALS awareness month is all about. From fundraising walks in communities across the country to breathtaking walks on the brink at Edgewalk around the top of the CN tower, this June we’re pushing the limits and challenging everyone to seize the […]