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 […]
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
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 […]
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 […]
Fighting for more time – to dream, to live, to be with loved ones
Published in Events, Walk To End ALS on June 20, 2019
Tags: 2019-personal-stories, advocacy, ALS, ALS awareness, ALS Awareness Month, community, families with ALS, funding als research
Karen Van Luven, 53, and her mom, 84, both get around their apartment using walkers. Karen moved in to her mom’s apartment nine years ago to be her caregiver. Her mom was experiencing mobility issues and could no longer walk without assistance. “Now that I am living with ALS, the roles are a bit reversed,” […]
A shift in perspective over the holidays
Published in Stories on December 13, 2017
Tags: families with ALS, holidays
James and Madeleine have been married for 55 years. Their shared life together has included three children, six grandchildren, and a beloved cottage that has been in the family for over five decades. ALS has forced the family to make some adjustments. For example, since James was diagnosed with ALS in 2013, he has lost […]
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 […]
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 […]
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 […]