Creating with her hands until she no longer can

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

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

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 […]

From the Boston Marathon to the 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

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,” […]

Walking in memory fuels hope and strengthens community

Lise Michaud’s brother, Eddy Lefrançois, made every day count. He lived nearly three decades with ALS, proudly defying the odds and outliving his “expiry date” (EXP: 04.97) which he tattooed on the inside of his forearm as a reminder to live with passion and purpose. Eddy’s personal motto – “Let’s Roll” – always kept him […]

Coach Sunshine’s ‘never quit attitude’ can help change the future of ALS

At the rink where he has coached boys’ ice hockey for more than 10 years, Adam Welburn-Ross, 43, is fondly known as “Coach Sunshine.” He wears his positivity as a badge of honour and now that he is living with ALS, his disposition is helping everyone around him appreciate every precious moment of the day. […]

Community spirit ignites passion to increase ALS awareness

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

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

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

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

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

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 […]