The Walk to End ALS events that take place across the province, throughout the year, mean different things to different people, but there is a common thread of support, community and knowing you’re not alone on this journey. James Young, a 42-year-old father of two young boys, considers himself one of the lucky ones. Diagnosed […]
Walking to increase funding for ALS research
Published in Stories, Walk To End ALS on October 9, 2019
Tags: 2019-personal-stories, community engagement, funding als research, fundraising, Get Involved, living with ALS, walk to end als
In the face of ALS, Dad is a hero and community is everything
Published in Events, Walk To End ALS on September 26, 2019
Tags: 2019-personal-stories, community, community engagement, fundraising, Get Involved, giving back, walk to end als
Kelsey Barker describes her dad, Jeff, as her hero. Diagnosed with ALS in February 2018, he has since lost the use of his right arm and is now having difficulty breathing and walking – but ALS has not changed the person he is. “He lights up a room. He is selfless and courageous. He pushes […]
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 […]
Leading Canadian ALS researcher stresses “time is of the essence”
Published in Research, Stories on August 9, 2019
Tags: 2019-personal-stories, ALS Canada Research Program, als cure, ALS research, Donate to ALS, Every August, find a cure for ALS, funding als research, fundraising, genetic research, motor neuron disease, research
“When you start researching ALS, it becomes a life mission,” says Dr. Janice Robertson, a prominent figure in the ALS research community in Canada and abroad. Dr. Robertson is studying variations within the brain and spinal cord of people living with ALS using two powerful new technologies that allow researchers to examine the nuclei of […]
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 […]
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 […]
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,” […]
Community spirit ignites passion to increase ALS awareness
Published in Events, Walk To End ALS on June 6, 2019
Tags: 2019-personal-stories, ALS research, Donate to ALS, donating to ALS, finding a cure for als, fundraise for ALS, fundraising for als, how to donate to ALS, How to donate to ALS research, how to help ALS, how to help people with als, walk to end als
An active mother of three young children, Stephanie Christiansen Hall wants people to know she has ALS – but she wants everyone to know that her disease is only part of her story. Apart from living with ALS, Stephanie is – and has always been – a selfless person with a positive nature, a desire […]
Finding inspiration from the small things makes a big difference
Published in Events, Walk To End ALS on June 3, 2019
Tags: 2019-personal-stories, ALS funding, ALS research, ALS research and funding, canadian ALS research, find a cure for ALS, finding a cure for als, funding als research
Brian Bower has always been passionate about sports. Above all, he is an ardent fisherman, known on occasion to snatch 15 minutes from his day for the joy of casting a line in one of the abundant waterways in and around Welland, where he lives. Brian also loves soccer, tennis, lacrosse, hockey and baseball. An […]
Music and resiliency: lessons from my father
Published in Events, Walk To End ALS on May 29, 2019
Tags: 2019-personal-stories, als canada, als ontario, ALS research, als support, clinical trials als, end als, finding a cure for als, funding als, funding als research, funding als trials, funding research for als, researching als, the walk to end als, walk to end als
Talking about his dad’s ALS diagnosis, Connor Stratton, 17, says, “It’s a hard thing to understand at times, but it’s good to try to look at the bright side because my dad still has his spirits up. He’s still happy around us, and that’s something that reflects on all of us.” Kerry Stratton, a well-known […]
Reinforcing spiritual values through community connection
Published in Events, Walk To End ALS on May 29, 2019
Tags: 2019-personal-stories, als canada, als clinical trials, als ontario support, ALS research, als support, clinical trials als, end als, finding a cure for als, funding als, funding als research, funding als trials, support als ontario, the walk to end als, walk to end als
Since receiving his ALS diagnosis in February 2018, Mark Ianniello’s life has changed in profound ways. He is a 49-year-old father to three teenagers and can no longer work to help support his family. ALS has affected his speech and his mobility. Mark admits to having ups and downs. Despite the challenges, he says ALS […]
Offsetting the loneliness and isolation of an ALS diagnosis with love and support
Published in Events, Walk To End ALS on May 23, 2019
Tags: 2019-personal-stories, ALS, als cure, als research is important, als research matters, Amyotrophic lateral sclerosis, Amyotrophic lateral sclerosis cure, motor neuron disease, treating als, walk to end als
For the past 40 years, Dale Hodgins has been saving lives as a paramedic and volunteer firefighter in Kingston, Ontario. In December 2018, he was diagnosed with ALS – a disease he was already familiar with through his work. As far back as the 80s and 90s, Dale remembers driving people living with ALS home […]
Positive and pragmatic – an approach for one family facing the realities of ALS
Published in Events, Walk To End ALS on May 15, 2019
Tags: 2019-personal-stories, ALS, als cure, als research is important, als research matters, Amyotrophic lateral sclerosis, Amyotrophic lateral sclerosis cure, finding a cure for als, finding a cure for motor neurone disease, motor neuron disease, motor neurone disease cure, treating als, walk to end als
According to Kevin, there’s one word that sums up ALS: a thief. “ALS is a thief – and a remorseless one at that,” he explains in writing. Now that he can no longer speak, he uses eye gaze technology to type messages with his eyes – his only method of communicating. “The sooner we can arrest […]
“Team Ed” a demonstration of love and support at the Walk to End ALS
Published in Stories, WALK for ALS on May 9, 2019
Tags: 2019 walks, 2019-personal-stories, als donations, als fundraising, ALS research, donations to als, finding a cure, finding a cure to als, how to help people with als, how to help people with als peterborough, peterborough walk 2019, research for als, walk to end als
Entering his 60’s, Ed Parcells was in the best shape of his life. He ran most mornings, cycled 60-100 km a few times a week, and played hockey on a regular basis. At the time, he and his wife Ev had sold their house and were looking forward to travelling and enjoying their retirement together. […]