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 […]
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
ALS Canada community support services continue to evolve during COVID-19
Published in Support & Services, Update on July 17, 2020
Tags: als ontario support, als support, caregiving, community, Community-based support, COVID19, living with ALS, support als ontario, supporting people with als
How support services are changing In the wake of the COVID-19 pandemic, our number one priority was to support the safety of the ALS community and our staff, and as a result, we quickly pivoted to moving all ALS Canada office staff to working remotely from home and made changes to our service model to […]
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 […]
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 […]
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 […]
No time to lose: ALS Canada volunteer and fundraiser sees urgent need for change
Published in Research, Stories, Volunteers on August 2, 2019
Tags: 2019-personal-stories, ALS Canada Research Program, als cure, ALS research, caregiving, Donate to ALS, Every August, Every August Until A Cure, fundraising, Ice Bucket Challenge, living with ALS, motor neuron disease
Beth Robertson’s husband, Tim, lived courageously with ALS for 12 years. He was sustained by the loving presence of his wife, Beth, his three children, and a large network of family and friends. Beth says she would do it all over again for Tim, but she admits ALS is a terrible burden for everyone it […]
Holiday gift ideas for someone living with ALS
Published in Support & Services on November 16, 2017
Tags: caregiving, community, holidays, living with ALS, support
What do you give someone living with ALS to show you care? There’s no ‘one-size-fits-all’ gift that works for everyone, but there are special ways to say “I am thinking of you.” The holiday season can be a perfect time to do just that. We recognize that it’s not always easy to know how to […]
Paying it forward to benefit people with ALS in the future
Published in Advocacy, Stories on May 24, 2017
Tags: caregiving, families with ALS, family, giving, giving back, legacy, living with ALS, support
Deirdre O’Connor and her husband, Floyd, became ALS Canada donors 15 years ago. At the time, they had no personal connection to the cause, but they liked the fact that ALS Canada was a small, cost-effective charitable organization without a lot of overhead. Deirdre’s generosity extends to half a dozen or more organizations she supports […]
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 […]
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 […]
Trevor and Jennifer: Finding love while living with ALS
Published in Stories on February 14, 2017
Tags: ALS, caregiving, living with ALS, support
This Valentine’s Day, we would like to highlight Trevor and Jennifer’s story about finding love while living with ALS. – Trevor was my first love in high school. Although short term, the strong connection we had was never forgotten. We lost track of each other but reconnected again after 28 years on Facebook in 2015. […]
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 […]