The ALS Society of Canada (ALS Canada) and the Kevin Daly Bursary Fund are pleased to announce the recipients of the 2023 ALS Canada Kevin Daly Bursary, granted to post-secondary students who share a personal connection to amyotrophic lateral sclerosis (ALS). The ALS Canada Kevin Daly Bursary is a national program for eligible students who […]
Empowering resilience and academic pursuits
Published in Fund Development, Support & Services on September 12, 2023
Tags: als stories, families with ALS, giving back
My brother Andrew, my only sibling, my closest friend.
Published in Stories on December 4, 2020
Tags: ALS, als stories, community, Donate to ALS, families with ALS, giving, giving back, holidays, living with ALS
Stories like the one below from the community are so important and really help people feel connected to one another. Right now we are collecting short stories and messages of hope from people like you so that we can share them with the community throughout the holiday season. You can contribute here. I always found […]
ALS gave me a different perspective
Published in Fund Development, Giving Tuesday, Stories on November 24, 2020
Tags: ALS, ALS awareness, als stories, community, Donate to ALS, donating to ALS, fundraising, giving, giving back, holidays, living with ALS, support
Here and now. After a year and a half of undiagnosed symptoms and testing, in November of 2018 I was diagnosed with ALS. I really remember that day as a transformative one. One moment my doctor was dropping the weight of the world on my shoulders by telling me I have ALS, and the next […]
Maintaining dignity, independence and safety through ALS Canada’s Equipment Loan Program
Published in Fund Development, Stories on November 3, 2020
Tags: ALS, ALS awareness, als stories, care, caregiving, community, Donate to ALS, donating to ALS, families with ALS, find a cure for ALS, finding a cure for als, fundraising, giving, giving back, living with ALS, support
Mark Vivarais was almost in tears as he walked back to his wife, Sandra, from a washroom at an outdoor outlet mall in Florida. He’d been stuck in there for half an hour, struggling to pull himself up from the low toilet seat. “That’s when it hit me,” Sandra recalled. “Oh my god, this is […]
Team “Living into a Cure” is keeping hope alive
Published in Events, Stories, Walk To End ALS on June 19, 2020
Tags: ALS, ALS awareness, ALS Awareness Month, als stories, community, Donate to ALS, families with ALS, living with ALS, walk to end als
Charmaine Loverin, who was diagnosed with ALS last year, has stayed positive through tremendous change and upheaval imposed by the disease, especially during the COVID-19 crisis. She left her home and relocated to Belleville to live with her sister, Michelle, who reached out with “open arms.” After the move, Charmaine returned to Toronto on a […]
A Duty to help
Published in Events, Stories, Walk To End ALS on June 16, 2020
Tags: ALS, ALS awareness, ALS Awareness Month, als stories, caregiving, community, Donate to ALS, donating to ALS, families with ALS, fundraising, living with ALS, walk to end als
ALS shatters dreams no matter when it strikes. For Deane Gorsline, 31, and his wife, Danielle, living with ALS means letting go of a lifetime of dreams. Focusing on the present helps them stay positive, whether it’s enjoying precious time with their new puppy, Trigger, or supporting the ALS community they belong to by joining […]
Daughter raises record amount for virtual Walk to End ALS
Published in Events, Stories, Walk To End ALS on June 9, 2020
Tags: ALS, ALS awareness, ALS Awareness Month, als stories, caregiving, community, Donate to ALS, donating to ALS, families with ALS, giving, giving back, living with ALS, walk to end als
Jocelyne Gall is doing her best to support her dad, Bill, who was diagnosed with ALS in July 2018. As the only child of divorced parents, she is the only family member attending to her dad’s needs – and with three young children of her own, she has a lot to manage. While her situation […]
Uncharted territory just “part of the journey” for 2020 virtual Walk participants
Published in Events, Stories, Walk To End ALS on June 5, 2020
Tags: ALS, ALS Awareness Month, ALS Canada Research Program, als stories, caregiving, community, Donate to ALS, donating to ALS, families with ALS, living with ALS, walk to end als
Even a high level of awareness about ALS cannot fully prepare anyone for what it takes to navigate the changes that occur as the disease progresses. Charlotte and Bob Brethour have faced many difficult hurdles, but they still appreciate every day they share together, “even when the best-laid plans have gone awry,” says Charlotte. “We’re […]
Creating with her hands until she no longer can
Published in Stories, Walk To End ALS on September 12, 2019
Tags: 2019-personal-stories, ALS, als cure, als stories, community, community engagement, Donate to ALS, families with ALS, find a cure for ALS, living with ALS, support, walk to end als
When Shelly Gregory first noticed her speech was slurred two years ago, she drove herself to the hospital in Belleville thinking she was having a stroke. Eight months later, in May 2018, she learned she had bulbar onset amyotrophic lateral sclerosis – a form of ALS that first affects people from the neck up. Since […]
Walking to end ALS when ALS runs in the family
Published in Stories, Walk To End ALS on September 5, 2019
Tags: 2019-personal-stories, ALS, als stories, caregiving, community engagement, families with ALS, living with ALS, motor neuron disease, walk to end als
It wasn’t until her own diagnosis that Jackie learned ALS can be passed on through generations. Jackie Pasch, 55, was diagnosed with familial ALS almost a year ago. Shortly after, she lost the use of her left arm and developed difficulty breathing necessitating the use of a BiPAP machine at night to help her breathe […]
Finding ways to make a meaningful difference while living with ALS
Published in Stories, Walk To End ALS on September 3, 2019
Tags: 2019-personal-stories, ALS, ALS awareness, als stories, Every August Until A Cure, funding als research, living with ALS, walk to end als
Until he was diagnosed with ALS in 2016, Alan Medcalf spent his adult life “in love with movement.” He was a snowboarder, cross-country skier, unicyclist, cyclist and competed as a runner, swimmer and triathlete. After a second hip replacement he cycled coast to coast across Canada in 2000 and logged over 100,000 km in the […]
Mother and son hold on to precious time left together
Published in Fund Development, Stories on August 23, 2019
Tags: 2019-personal-stories, ALS, ALS research, als stories, caregiving, Donate to ALS, Every August, Every August Until A Cure, families with ALS, fundraising, Ice Bucket Challenge, support
Five years ago, when the ALS Ice Bucket Challenge went viral in 2014, Mario knew very little about ALS, and had no idea how it would affect his life. Because of a co-worker whose dad was living with ALS, Mario completed the ALS Ice Bucket Challenge. “Once I got tagged in a post there was […]
From ice bucket to bucket list: how Margot is coping with ALS
Published in Research, Stories on August 15, 2019
Tags: 2019-personal-stories, ALS Canada Research Program, ALS research, als stories, Donate to ALS, Every August, Every August Until A Cure, find a cure for ALS, funding als research, fundraising, Ice Bucket Challenge, living with ALS, motor neuron disease
Margot Algie heard about the ALS Ice Bucket Challenge in 2014 through friends and had no idea that only one year later, she would be diagnosed with the disease. Since then, she has come to understand firsthand the importance of maintaining the momentum of the viral social media phenomenon that resulted in a $21.5M investment […]
Loss and healing: A 900-km bike ride to drive ALS awareness
Published in Advocacy on June 25, 2019
Tags: 2019-personal-stories, ALS awareness, ALS Awareness Month, als stories, finding a cure for als, funding als research, fundraising
Miles4Matty is part of Adam Foley’s search for meaning after losing his brother, Matthew (aka Matty), who passed of ALS in 2014 at the age of 38. Adam and Matthew were roommates at the time of the diagnosis. When Matthew’s mobility became a significant challenge, they moved into a more accessible apartment together where Adam […]
From the Boston Marathon to the Walk to End ALS
Published in Events, Walk To End ALS on June 21, 2019
Tags: 2019-personal-stories, ALS awareness, ALS Awareness Month, als stories, community, families with ALS, finding a cure for als, living with ALS, walk to end als
On June 15, Don Doan participated in the Walk to End ALS in Brampton for the fourth time. It’s been three years since he was able to walk the course, but his positive outlook hasn’t changed. There are always people around, including his wife, Pam, to help with his wheelchair. “Generally, it’s a fight over […]
Communicating an ALS diagnosis
Published in Support & Services on November 20, 2017
Tags: als stories, families with ALS, living with ALS
There is no easy way to tell family and friends you have been diagnosed with ALS. And there is no right or wrong way, either. Individual personalities, family circumstances, and the degree to which the symptoms are visible can all play a role in when, how, and with whom to share the news. Lianne Johnston […]
Do you use ALS Canada’s Equipment Loan Program? Improvements are here!
Published in Support & Services on July 12, 2017
Tags: als stories, support
Updated November 28, 2017 In a previous post we shared that we would be implementing a series of improvements to better serve people and families living with ALS in Ontario. One of the improvements we made was to our equipment program, which provides people with a range of items – mobility devices, lifts and transfers, […]
Honouring Mom this Mother’s Day, and always
Published in Stories on May 13, 2017
Tags: als stories, care, caregiving, community, families with ALS, family, fundraising, living with ALS, Mother's Day, remembering, support, WALK for ALS
For many families, Mother’s Day is a time of celebration and joy. For others, it can be a time of sadness and reflection when there is an empty seat at a once-filled dinner table. For Anna Acheson, Sunday will be the first Mother’s Day she spends without her mother, Margaret. After participating in the 2016 […]
“When you are loved, you have everything:” ALS Canada ambassador Eddy Lefrançois reflects on 25 years living with ALS
Published in Stories on April 14, 2017
Tags: als stories, living with ALS
Like many young people, 22-year-old Eddy Lefrançois had carefully mapped out his future and had a vision of how his life would be. Then, on April 14, 1992, his doctor delivered the news that Eddy had ALS. That day and that news changed his life forever – but not in the way you might expect. […]
National Family Caregiver Day: A conversation with ALS Caregiver Jonathan Corber
Published in Stories on April 4, 2017
Tags: advocacy, ALS, als stories, care, caregiving, families with ALS, living with ALS
Jonathan Corber is an ALS Canada Ambassador. After his mother, Wendy, was diagnosed with ALS in February 2016, Jonathan became one of her primary caregivers and stayed in this role through to the end of her journey. Jonathan took some time to connect with us recently to share his experience as his mother’s caregiver for […]
Love wins against ALS
Published in Stories on February 12, 2016
Tags: ALS, als stories, care, caregiving, community, support
1988. At the office. A young independent redhead grabs Jocelyn’s attention immediately. She emits a contagious “joie de vivre” that instantly seduces the young man. Chantal, on the other hand, was charmed by Jocelyn’s ability to listen and his sincere consideration for everyone around him. After almost 23 years of marriage and a daughter named Maya, their […]
The holidays will never be the same for John
Published in Stories on December 15, 2015
Tags: ALS, als stories, awareness, care, caregiving, community, families with ALS
Last Christmas I was playing hockey. Now I need help to stand up. John Hamm, diagnosed with ALS in 2014 One of John Hamm’s favourite holiday traditions is playing pond hockey with his three kids. But this year, he won’t be strapping on skates. This holiday season, John’s wife Cathy will bundle him up in […]