Giving back honours a father’s sacrifice and untimely passing

Lolo Lam has a deep sense of gratitude for the sacrifices her parents made leaving Hong Kong so she and her two brothers could have a better life in Canada. She was only a child at the time, but she still remembers her parents taking her to a protest rally during the summer of 1989 […]

The end of the year brings reflection and renewed perspective

“ALS is not for the weak of heart,” says Martha Williams whose husband, Scott, has been living with a slow-progressing form of ALS since 2015. The symptoms may be slow-moving compared to the rapid decline some ALS patients experience, but looking back over the past year, Scott says, “it’s still too fast for us.” Last […]

When you live with ALS, you can’t afford to take time for granted

Peter Wood has never taken time for granted, especially moments in the presence of his two young children. “Every day counts when you can’t take for granted that you’ll have enough time together,” he says. “I wish I could still hug them so they could feel just how much I love them.” Peter and his […]

Holiday gatherings connect family and honour a mother’s memory

Mahek Kaur is a 15-year-old first generation Canadian with strong cultural roots to her parents’ homeland in Punjab, India. “The importance of family connections is ingrained in us,” she says. “We have huge families and we stick together.” This holiday season, when Mahek’s extended family travels from across Canada and the United States to be […]

Because of you: Over $2 million raised through Walk to End ALS events in Ontario

You and your communities have made this year’s Walk to End ALS events a tremendous success across Ontario, raising almost $2.1 million to date! Thank you for coming together and uniting in your desire to put an end to ALS. Thank you for showing your support for the 3,000 Canadians and their families living with […]

Through sickness and health: a couple’s love perseveres in the face of ALS

The first thing one notices upon walking into Jeff and Darlene’s airy bungalow is the feeling of warmth and love that reaches into every corner: it’s present in the family photos that adorn the walls and the tasteful trinkets carrying messages of friendship and hope. And it’s a stark contrast to the second thing that’s […]

ALS Canada Invests Almost $1.4 Million Towards Innovative ALS Research Projects In Pursuit of a Future Without ALS

TORONTO – After a rigorous competition, the ALS Society of Canada today announced the recipients of the 2019 research funding grants. Through the ALS Canada Research Program, the only dedicated source of ALS research funding in Canada, nearly $1.4 million will be invested in leading-edge ALS research that will further the study of the disease. For […]

ALS Research Update | October 2019

ALS Research Update, October 2019 Welcome to the October 2019 ALS Research update. This month, you’ll learn about the progress researchers have made in: transforming the way clinical trials are conducted; understanding the roles that the microbiome and protein clumping may play in ALS; and identifying the mechanisms by which different genes may contribute to […]

A London children’s choir sings to support ALS Canada

London’s east end will be filled with the joyous sound of children singing on Tuesday night as El Sistema Aeolian hosts their second annual ALS fundraiser, ‘Youth of Today, Cure for Tomorrow’ in partnership with Canada Life. The junior choir and children’s orchestra will take the stage alongside special guest Alexandra Kane, a local music […]

Creating a foundation for future therapies: The need for antibody validation in ALS research

Antibodies are produced by the immune system to protect the body against foreign invaders like bacteria and viruses. They work by binding to specific proteins on harmful agents and triggering their removal or destruction. Antibodies are also commonly used as a tool in research because they bind to particular proteins. This allows researchers to see […]

Understanding the Issues: 2019 Federal Election Health Commitments

With the 2019 federal election campaign underway, are you curious about what the parties are saying about the issues that could affect Canada’s ALS community? ALS Canada asked each of the major parties what they would do, if elected, to help people and families affected by ALS. Specifically, we asked them about how they would […]

Walking to increase funding for ALS research

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 […]

In the face of ALS, Dad is a hero and community is everything

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 […]

What’s all this FUS about? A new way of delivering future ALS treatments is off to a good start.

Delivering promising treatments to the brain can be a challenge because our bodies have a specialized barrier, called the blood-brain barrier, that protects it from substances in the bloodstream. For people living with ALS, this means researchers need to develop creative ways to cross this barrier so that potential treatments can be delivered directly to […]

Think you have what it takes to pull a plane?

With the 2019 ALS Canada Plane Pull to End ALS happening this weekend, we connected with returning participants to get the low-down on what this year’s teams should keep in mind as they step onto the tarmac. Preparation Jessica Pellerin is the Communications Officer at PortsToronto. She wants to remind participants to “warm-up, stretch, and […]

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 […]

ALS Research Update | August 2019

What’s happening in the world of ALS research at this point in the year? Read about the progress researchers have made in developing new and better models to study ALS in the lab, insights gained into the progression of ALS on a cellular level, new compounds identified as potential treatment strategies for ALS and the […]

Mother and son hold on to precious time left together

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

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 […]

How you can fundraise for ALS Canada through Facebook

In late 2018, Facebook began offering the option for Canadians to create fundraisers for nonprofit organizations or for personal causes. Since then many of you have reached out to us with questions about how these giving options can be used to support ALS Canada. We know Facebook can be a quick and easy way to […]

Leading Canadian ALS researcher stresses “time is of the essence”

“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

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 […]

How charitable action inspired a cross-Canada bike journey

Last spring, Mike Leech, 59, approached his plant manager to request a 2-month leave from work to complete a bike ride across Canada for charity. An avid cyclist, he dreamed of cycling coast to coast but he wanted to make it more than just a physical challenge. He wanted to raise awareness and money for […]

Loss and healing: A 900-km bike ride to drive ALS awareness

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 […]

Because Of You: ALS Canada’s 2018 Annual Report

Every day, more than 3,000 people and families throughout Ontario and Canada live with the realities of ALS, a devastating disease that takes away dreams, abilities, and lives. But for all ALS takes, it cannot take away our shared desire for a future without this disease. We rely on you – our generous donors – […]

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 […]

It’s about time to change the reality of ALS

ALS is always about time. How much time do I have? How much time until I can’t hug my children? How much time until I can no longer walk, or eat, or breathe? It’s about time we change that. It’s about time we stop ALS from shattering dreams, from devastating lives. It’s about time to […]

Learning about ALS for the first time: young people share their perspectives

Kyla and Vaughn visited their Great Uncle Murray in Thunder Bay a couple summers ago, making the trip all the way from Colorado. It was their first time meeting someone with ALS, and they were both affected deeply by the experience – choosing to write about it for school assignments later that year. Thank you […]

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 […]

Can the key to slowing ALS progression be found in the immune cells of the brain?

Microglia are the primary immune cells of the brain and spinal cord. They patrol the central nervous system to track down and dispose of unwanted cellular debris and dead neurons, as well as organisms like bacteria and viruses that pose a threat of infection. When they detect invaders, they change their behaviour to summon the […]

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 […]

“Team Ed” a demonstration of love and support at the 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. […]

Partnering with the ALS community on a new assessment tool

When someone has a disease, like ALS, their quality of life is affected in many different ways as the disease progresses. “Quality of life can mean many different things to different people. For some, it means functional abilities, like walking to the mailbox, but for others, it may mean leisure activities, or family and social […]

Augie’s Quest and ALS Research in Canada

For the second year in a row, Orangetheory Fitness is giving its members (and the community) a way for you to make an impact while getting in a good workout. It’s a win-win! On May 1, 2019, Orangetheory Fitness is launching a campaign throughout Canadian studios to benefit the ALS Canada Research Program. Their inaugural […]

Can new understandings about RNA granules explain types of ALS?

Over the past several years, ALS researchers have learned that little structures in motor neurons called RNA granules are one of the most common biological differences in people with ALS and frontotemporal dementia compared to people without those diseases. These small ball-like granules are made of RNA, molecules that relay the genetic instructions in DNA, […]

Does a previously unstudied protein play an important role in ALS?

A protein called TDP-43 is usually found inside the cell nucleus where it plays an essential role in regulating many cellular processes. But in 97 per cent of people with ALS and nearly half of the people with frontotemporal dementia, TDP-43 is found outside the cell nucleus in an area called the cytoplasm. Understanding why […]

Celebrating Your Impact: ALS Canada Volunteers

In celebration of 2019 National Volunteer Week #NVW2019, you’ve heard from volunteers who support the work of ALS Canada in different ways.  You’ve read about what they do, why they do it and about memorable experiences they’ve made along the way. Whether you are fundraising, creating awareness, providing event support or working behind the scenes […]

Can antibodies help diagnosis ALS faster?

Current methods for diagnosing ALS can take up to two years and rely heavily on ruling out other conditions that share similar signs and symptoms. It is believed that by the time ALS is diagnosed, therapies may be less effective as the damage to neurons is too extensive. Therefore, a better way of diagnosing ALS […]

Does a viral infection play a role in ALS onset and progression?

A group of viruses called enteroviruses usually cause mild illnesses with symptoms that may include fever, respiratory issues and flu-like muscle aches, similar to the common cold. However, some can cause more serious health problems, such as enterovirus D68 that can cause severe respiratory illness or the poliovirus that causes polio. Some researchers have long […]

ALS Research Update | March 2019

Bringing you the latest news on advancements in ALS research, the ALS Canada Research Program team regularly summarizes what they believe are the most significant discoveries throughout the year. This is the first update for 2019. Researchers identify a potential new biomarker and drug target for ALS Did you know that there is a protein […]

Can Advanced Brain Imaging Diagnose ALS Earlier?

Current methods for diagnosing ALS involve ruling out other diseases that share similar symptoms. As a result, it can take a year or more from the onset of symptoms to confirm a diagnosis of ALS. That’s far too long — especially for a disease that on average claims lives within two to five years after […]

Could decreasing the over-excitability of motor neurons be a new way to treat ALS?

Within the brain and spinal cord, neurons pass electrical signals to each other through specialized chemicals called neurotransmitters. When this signalling network functions properly, there is a good balance between chemicals that excite the neurons and chemicals that inhibit them. Both excitation and inhibition are necessary for the brain to function normally and send signals […]

What’s the story with CuATSM

This article was originally posted on the Motor Neurone Disease Association research blog on January 15, 2019. Thank you to the author Dr. Nicholas Cole, Head of Research, as well as the Motor Neuron Disease Association for giving ALS Canada permission to re-post this content.   There has recently been a flood of news stories […]

Do newly-discovered alternative proteins play a role in ALS?

Proteins are essential building blocks the body uses to make tissues such as muscles, cartilage, skin and blood. Conventional science assumes that a section of DNA known as a gene provides instructions for a single protein, or “encodes” a single protein. A molecule called messenger RNA carries those instructions for the production of one specific […]

ALS Research Matters

The realities of living with ALS – a challenging and terminal disease – led Carol Skinner and Eddy Lefrançois, two Canadians affected by ALS, to start a letter-writing campaign. The campaign encouraged fellow Canadians to contact their elected federal representative to ask for sustainable and direct ALS research funding. Over 2,300 Canadians joined Carol and […]

Cutting-edge technology allows University of Toronto researchers to tackle ALS in a new way.

Scientists have discovered variation within different areas of the brain and spinal cord of people living with ALS — some areas show greater degeneration while others are unaffected. With a $125,000 project grant from the ALS Canada Research Program in 2018, Dr. Janice Robertson and Dr. Paul McKeever, a postdoctoral fellow in her lab, will […]

Can a revolutionary gene-editing tool create better animal models for studying ALS?

Animal models enable scientists to study human diseases in lab settings. They help scientists learn about the biological changes that occur during disease onset and progression, and they can also speed the identification of promising therapies for testing in future clinical trials with human volunteers. In 2005, when he was still a graduate student, Dr. […]

How are two of the most common occurrences in ALS related?

Scientific discoveries are like puzzles. At first, two puzzle pieces may not appear to fit together, but then a new way of comparing them makes it possible to see how they connect, helping to fill in the picture. Mutations in the C9ORF72 gene are the most common genetic cause of ALS. Another abnormality that occurs […]

Can measuring “biological age” explain why ALS affects people differently?

ALS manifests very differently among people who develop the disease. It can occur anytime in adulthood. People usually only live two to five years after diagnosis, but it can range from six months to more than 20 years. Some people living with ALS, about 30 to 50 percent, experience cognitive or behavioural difficulties. Why does […]

Wrapping up the holiday giving season

2018 was a momentous year for the ALS community. Discoveries were made that advance our understanding of the disease, clinical trials showed encouraging results, and the first therapy in over 20 years was approved for use in Canada for people living with ALS. Yet in the same year, ALS continued to take countless moments and […]

Top 10 research stories of 2018

Last year, major scientific advances in Canada and internationally led to significant and exciting progress in ALS research. Discoveries that increase our understanding of ALS are happening far more often than ever before, and as a result many new experimental treatments are set to begin human clinical trials in the next few years. Due to […]