Young mother of three adapts to life with ALS

For many people, the holidays are a special time for making memories and spending quality time with friends and loved ones. For 29 year-old mother of three, Stephanie, these quality moments became all the more meaningful since she was diagnosed with ALS. Stephanie’s ALS story “I don’t want to die. I want to see my […]

Holiday Gift Ideas

Looking after a family member or close friend who is living with ALS is a precious act of love and devotion. It is often a full-time commitment that demands a lot of physical and emotional energy, making it challenging to maintain your own health and well-being. If you know someone in this role, the holiday […]

ALS Society of Canada dedicates last of the matched Ice Bucket Challenge research funding to early-career researchers in pursuit of a future without ALS

2018 funding competition with Brain Canada results in $720,000 for six trainee awards – more trainee awards in a single year than ever before TORONTO December 13, 2018 – The ALS Society of Canada (ALS Canada), together with Brain Canada, today announced $720,000 in funding for six new trainee awards, thus completing the last of the […]

An author’s “silent rebellion” against ALS

Prior to 2009, Zehra Madenli was an active college student, studying Fashion Management at George Brown College in Toronto. She was talkative and outgoing, and loved spending time outdoors. Everything changed when Zehra was diagnosed with ALS. Within 12 months of diagnosis, she lost the ability to move and speak. Day by day, Zehra lost […]

Keeping hope alive this holiday season

2018 has been a year of promising discoveries and encouraging clinical trials, but ALS continues to rob countless moments from too many families – families like the Corbers who know all too well the gaps ALS can leave in people’s lives. Today, on Giving Tuesday, every donation to ALS Canada will be 100% matched by […]

Giving Tuesday 2018

When you live with a terminal disease like ALS, losing the use of your arms means losing the ability to hug those you love. Losing the use of your legs means you now watch — not run through the park with — your children. Losing the ability to speak means never again saying, “I love […]

Thanks to donor generosity ALS Canada invests $1 million in innovative Canadian ALS research to provide a greater understanding of ALS

The ALS Canada Research Program awards eight new project grants in the pursuit of new therapy targets. TORONTO, November 15, 2018 – The ALS Society of Canada (ALS Canada) today announced an investment of $1 million in eight new research projects being funded in 2018 through the ALS Canada Research Program, which is the only […]

ALS Canada Strengthens Partnerships Within the Health Charities Sector

ALS Canada is proud to share that Tammy Moore, CEO ALS Canada, has been named Chair of the Board of Directors for the Health Charities Coalition of Canada (HCCC). ALS Canada’s ongoing membership with HCCC helps to bring the perspective of the ALS community to the broader advocacy efforts of health charities in support of […]

ALS took Eddy’s voice – today he has it back again

*UPDATED January 2019 – Eddy passed away from ALS in early 2019. Until this death, he worked tirelessly to raise awareness of ALS and mobilize others to support the cause, using social media and his personal website, to connect with people near and far.   Imagine waking up and trying to turn on the lights, […]

The Do’s and Dont’s of Pulling a Plane

The countdown is on to ALS Canada’s Plane Pull to End ALS. With only two days until the event, we wanted to help get you in the right frame of mind and give you some advice to consider. Pulling a plane isn’t something that most people have done and there really isn’t a lot of […]

Pulling together – with our sponsors – to end ALS

It takes a lot of people to develop and execute an incredible fundraising event — and establishing and nurturing strong relationships is critical to its success. Our partners have demonstrated commitment, dedication and enthusiasm for the upcoming Plane Pull to End ALS and we wanted to take this opportunity to highlight their contributions. Thank you […]

ALS Research Update, October 2018

ALS research is at a time of unprecedented advancement and Canada’s world-class ALS research community – along with international ALS researchers and experts – are accomplishing more than ever before. With new advancements being announced daily, the ALS Canada Research Program team regularly summarizes what we believe are the most significant research discoveries. We’re excited […]

A Thanksgiving reminder to treasure those we care about

Today, on a day when many Canadians are sharing a meal and thinking about their blessings, Tammy Fasken is giving thanks for her family, friends and network of formal and informal supports who are the reason she is alive today. Tammy has been living with ALS for three years, receiving the diagnosis after more than […]

Health Canada has approved Radicava (edaravone), a second ALS treatment for Canadians

Highlights: On October 4, Health Canada approved Radicava (edaravone) for the treatment of ALS. Health Canada’s terminology for this approval is called a Notice of Compliance, or NOC. The approval follows a 180-day priority review of the drug. Approval from Health Canada means that Radicava (edaravone) can be marketed and sold in Canada. Other considerations, […]

Power in Numbers

Updated October 17, 2018 The first ALS gene was discovered over two decades ago. By the end of 2017, scientists had found more than 25 genes. By studying these genes that are involved in familial ALS, which accounts for 5 to 10 per cent of ALS cases, researchers hope to learn more about the 90 […]

ALS Canada’s Plane Pull to End ALS moves to Downtown Toronto

By now you’ve likely heard or read about our new partnerships with Ports Toronto and Porter Airlines Inc. It’s exciting because our 8th Annual Plane Pull to End ALS has found a new home at Toronto’s Downtown Billy Bishop Airport and the move has given us the opportunity to expand on our vision to deliver […]

ALS Canada Brings the Eighth Annual Plane Pull to End ALS to Billy Bishop Airport

The October 20, 2018, event is an opportunity for corporate teams to pull a 37,000-lb plane 100 meters and raise funds to support a future without ALS. TORONTO – September 17 – Today, ALS Canada is excited to announce that the eighth annual Plane Pull to End ALS will take place at Billy Bishop Toronto […]

Living with ALS, one day at a time

Making memories and preserving them through photography has always been a way of life for David Liles. As a formerly self-employed photographer, David is used to looking for the best angles in any given situation, making everyday moments a little more extraordinary. This way of moving through life has carried David through his ALS diagnosis, […]

Can environmental impacts on genes explain why ALS affects people differently?

Updated October 17, 2018 Over the last decade, scientists have discovered many genes related to ALS, but there are still many questions about how mutations in those genes spark the development of the disease. The range of onset for ALS is wide: it can occur anytime in adulthood. The disease duration is usually two to […]

Toronto family reflects on the realities of “living and dying” with ALS

Two months after receiving his ALS diagnosis in June 2017, Chris Gort made a decision to start writing letters to his family and friends. What started out as a small endeavour to keep his loved ones informed on his ALS progression, grew to a mailing list of 175 people. Reading these letters, the reality of […]

New clinical trials for Canadians with ALS

Updated October 17, 2018 The opportunity to be involved in clinical trials for experimental ALS treatments is something that is often on the radar for people who are living with ALS. Did you know that there are three clinical trials in Canada that recently started recruiting volunteers or will open soon? On Wednesday, October 17, […]

WALKing for ALS with gratitude and positivity

For the second year in a row, the Williams family is “trekking for ALS research – boldly going where ALS research needs to go.” These are the words of Scott Williams, who since receiving his ALS diagnosis in 2015, has adapted his love of the Star Trek franchise into a rallying call for the WALK […]

The impact of donor dollars on ALS research in Canada

The result of the 2014 Ice Bucket Challenge gave the ALS community a tremendous gift: awareness and unprecedented investment in ALS research. Thanks to the viral fundraising phenomenon that year, along with matched funds from Brain Canada (through the Canada Brain Research Fund with financial support from Health Canada), the investment of $20 million allowed […]

A Community Connected

In 2014, the Ice Bucket Challenge gave hope to people and families living with ALS – hope that one day there would be a cure for this terminal disease. With the Ice Bucket Challenge came an immense responsibility to invest donor dollars with care and consideration, and as a result, ALS Canada’s investments have helped […]

Every August Until A Cure 2018

“Every August until a cure.” These five words were first spoken by ALS patient and advocate, Pat Quinn, upon accepting a Webby Award for his part in creating the Ice Bucket Challenge. The social media phenomenon raised millions of dollars for charitable organizations dedicated to funding ALS research and support services. This type of investment […]

The emotional challenges of ALS

When someone hears about ALS, the first thought is often about the loss of physical function; for example, the progressive inability to walk, talk, eat, swallow, and eventually, breathe. Losing these functions one by one can be profoundly difficult on a person and can contribute to an additional set of emotional challenges below the surface […]

Wrapping up ALS Awareness Month

ALS Awareness Month is all about telling stories. Over the course of the month of June, people and families affected by ALS shared their personal stories about why they gave and who they gave for. On June 27, 2018, Dr. David Taylor, VP of Research at ALS Canada was joined by caregiver turned volunteer, Beth Robertson, […]

Mother and daughter caregiving team reach out with love and compassion

When Emma and Tom Belen decided to share the tragic news of Tom’s ALS diagnosis with their two daughters at a Sunday lunch gathering in March 2011, their eldest daughter, Stephanie, surprised them both. She decided to announce her pregnancy even though she and her husband hadn’t planned on telling anyone before the end of […]

Healing through giving: A daughter’s story

It was Noella LeBlanc’s father who was diagnosed with ALS, but she believes the disease was responsible for her mother’s death, too. “The two of them had been joined at the hip for nearly 50 years, raising their children and enjoying travel in their retirement years” Noella says of her parents before the diagnosis. “My […]

Enduring love of a ‘forever husband’ inspires hope

ALS took the love of her life in September 2017, but Debbie Caswell’s love for her husband Jamie is still the light that guides her. This June Awareness Month marks their first wedding anniversary. At the time of the ceremony, Jamie had already lost the ability to eat, speak, and breathe without the help of […]

A Caregiver’s Story, Part 3: Looking forward, looking back

Jess Gustafson says she will never forget the first time she met Lianne, the ALS Canada Regional Manager in her area. Lianne came and sat with Jess and her husband, Alan, on their front porch to talk to them about what they could expect following the shocking news confirming Alan’s ALS diagnosis. Lianne provided informed […]

A Caregiver’s Story, Part 2: Speaking out against the helplessness of ALS

It is difficult to stay positive in the face of an ALS diagnosis. Jess Gustafson says she and her husband, Alan, found hope and courage by supporting each other with a love that deepened over the course of Alan’s illness. She was also sustained by the outpouring of support offered by their wide circle of […]

A Caregiver’s Story, Part 1: Championing the ALS cause

Caring for a loved one with ALS is a challenging task that requires time, energy and emotional resilience, and caregivers give so much of themselves — time and time again. Even after a loved one passes away, caregivers continue to give in many ways. And for everything that ALS takes, love is the one thing […]

How it feels knowing your daughter has ALS

Peter Sharman and his wife, Louise, were on a cruise in the Black Sea when they received the call. Their daughter, Carol, had just been diagnosed with ALS and they were thousands of miles away. Immediately running to the computer, Peter looked up those three letters to see if what he had heard was true […]

Radicava (edaravone): Make your voice heard

Updated July 18, 2018 The Canadian Agency for Drugs and Technologies in Health (CADTH) recently posted an open call for patient input on Radicava (edaravone). This is an additional step along the approval and affordability pathway for the drug, which is currently being reviewed by Health Canada. In response to CADTH’s call for patient input, […]

Giving back to stop ALS from taking more

According to Brian Heaney, the Kitchener/Waterloo WALK for ALS is the “best day of the year.” As a dedicated participant attending the WALK for his eighth year in a row, Brian has a robust understanding of what the WALK for ALS in his community is all about – and he looks forward to attending with […]

ALS Research Update, June 2018

ALS research is at a time of unprecedented advancement. Our biggest hope is to stop ALS from stealing dreams, abilities, and lives – and researchers are closer than they’ve ever been to making this a reality. With such unprecedented momentum, we can’t afford to be stagnant. Give now to stop ALS from taking. This ALS […]

Long-time altruist lends his voice to ALS cause

Throughout his career, Vincent Quinn has worked with people living with disabilities, tended to social justice issues for homeless youth and adults, and facilitated support groups for people who have lost someone to suicide. Today, he volunteers his time to the Barrie WALK for ALS and the Board of Directors of ALS Canada, where he […]

Acting against everything that ALS takes

June is ALS Awareness Month in Canada. And while we are only four days in, already there has been lots of momentum behind our shared cause: MPs have made statements in the House of Commons; landmarks have been lit in purple; WALK for ALS events are in full swing in communities across the country. Awareness […]

Almost 30 years living with ALS and volunteering just as long

ALS usually moves at a rapid pace but Sharon Carson has been living with the disease for almost 30 years. It started with loss of control in her hands and arms making it difficult for her to manage doorknobs, seatbelts, buttons, and shoelaces – and then restricting her ability to drive, dress herself, and eat […]

Walking for a common cause keeps the Bailis family connected

Brigitte Bailis is described by her three daughters as a friendly and easygoing woman that was more of a friend to them growing up than a mom. As someone who liked to run, salsa dance, cycle, and try new things, Brigitte was the kind of mom that her daughters wanted to go for coffee with. […]

Walk to End ALS fundraiser inspired by the hope of future treatments

When Mike Rannie first noticed a problem in his right hand in October 2016, he assumed it had something to do with the arthritis he had been living with for 14 years. In fact, the lack of mobility was an early symptom of ALS. After a series of tests and consultations with neurologists, Mike received […]

Richard and Heather leave gifts of hope for the future

Richard Ellis and Dr. Heather Durham are two people who have each been affected by the realities of ALS, but in very different ways. Having witnessed the physical and emotional tolls of the disease, Richard and Heather each decided to leave a gift to ALS Canada in their wills — gifts that will bring hope […]

Making life better for people living with ALS today inspires couple to pay it forward

Sandy and Mark Vivarais’ three-year-old grandson, Keaten, is a ray of sunshine in their daily lives, especially now that Mark has been diagnosed with ALS. Keaten is also a great little helper. He loves to put Mark’s socks on and comb his hair for him, simple tasks Mark can no longer complete on his own. Keaten […]

Kingston family raises funds, awareness and hope for a future without ALS

Joe Pacheco has found a way to channel his ALS diagnosis into positivity and a renewed sense of purpose to support others. Having been diagnosed in late 2012, he has been living with the disease for almost six years — time he has used to help raise funds, awareness and hope for a disease with […]

A decade of strength, support and hope in Georgetown/Acton

Over the past decade, members of the Georgetown/Acton community have rallied together to help people and families living with ALS make the most of every moment, raising $1.6 million for ALS Canada — funds that provide help to those living with the disease today and hope in the form of research investment for a future […]

Can microscopic bubbles in our blood deliver ALS therapies effectively?

One of the hallmark characteristics of ALS is the clumping of proteins in motor neurons that are believed to cause toxicity and eventual death of the motor neurons, resulting in the loss of muscle control and mobility, and eventually, the abilities to eat and breathe. Many scientists are looking for ways to eliminate protein clumping […]

A Mother’s Day story of love and devotion

Chris Silva’s mom Darlene was diagnosed with ALS on Mothers’ Day in 2016. She was 48 years old, a single parent, and devoted to her two sons. “It was all about me and my brother,” says Chris, who remembers his mother as “the most important person in my life. She was both parents to me.” […]

Halton family challenges ALS by giving back to the community

When Mike and Carmen Cels participated in the Ice Bucket Challenge in 2014, they had no idea that ALS would affect them on a personal level. Both professionals in the pharmaceutical industry, they were peripherally aware of the disease at the time; however, it wasn’t until Mike was diagnosed with ALS in 2017 that they […]

Ice Bucket Challenge funded research published in scientific journal “Cell”

New research from the University of Toronto and the University of Cambridge, funded in part by the Ice Bucket Challenge and the ALS Society of Canada’s partnership with Brain Canada, is having an impact on our understanding of ALS and expanding the pathways for research into ALS treatments. Published today in Cell, the findings reveal […]

A message from ALS Canada to our volunteers

As a charitable organization, ALS Canada relies on the time and talents of dedicated volunteers in so many ways. Each one plays a vital role in helping us achieve a future without ALS. For the final day of National Volunteer Week, we want to share a message from ALS Canada’s CEO, Tammy Moore, to the […]

Young fundraisers making a big impact

When a disease like ALS strikes, people often rally around their loved ones and resolve to make a difference. The realities of the disease are such that every member of the family is impacted — including children and youth — inspiring them to take action for a future without ALS. ALS Canada is fortunate to […]

National Volunteer Week | Debbie Damario and Ashley Dunseith

Today we are profiling two volunteers from the Niagara WALK for ALS: Debbie Damario and Ashley Dunseith. Both Debbie and Ashley have lost a loved one to ALS. Now, they dedicate their time to the Niagara WALK for ALS as a way to ensure funds are raised for a future without ALS. Watch this video […]

National Volunteer Week | Judith Malvern

For day two of National Volunteer Week, we’re introducing you to Judith Malvern, a committee member for the York Region WALK for ALS. When her sister passed away from ALS, Judith felt she needed a way to pay it forward in her sister’s memory. She started volunteering with the WALK for ALS so that other […]

Shining a light on volunteerism across the board

As a charitable organization, ALS Canada is fortunate to have a legion of volunteers who dedicate their time and talents to our shared cause. Each one of these volunteers has a unique story and experience that brought them to the organization, but they all share one thing in common: the desire to contribute to a […]

How new drugs become approved and available to Canadians

With the news that manufacturer MT Pharma is pursuing the regulatory channels necessary to bring the drug edaravone to Canada, the ALS community in this country finds itself facing the possibility of a second treatment option nearly 20 years after riluzole was approved. But how does any new drug become approved in Canada – and […]

Become a monthly donor and contribute to a future without ALS

If you’ve ever been touched by ALS, you understand how devastating the disease can be. A disease that takes away someone’s ability to walk, talk, eat, swallow, and eventually breathe, ALS has no cure and the majority of people diagnosed die within two to five years. If ALS is your cause of choice and you’d […]

Can insights about why eye muscles are resistant to ALS help preserve function in other muscles?

Muscles are made of separate fibres bundled together that receive signals from motor neurons, causing the muscles to contract or relax. Motor neurons connect to individual muscle fibres connect to at tiny places called neuromuscular junctions where specialized glial cells called perisynaptic Schwann cells (PSCs) keep the connections functioning well in a healthy body. PSCs […]

ALS Canada responds to the #ALSPepperChallenge

From ice cold buckets of water to red hot peppers, this new viral challenge is turning up the heat for ALS research around the world. Now, ALS Canada accepts the #ALSPepperChallenge — thanks to Eddy Lefrançois, Justin Landry and MP Francis Drouin for the nominations. We challenge Reshmi Nair of CBC News Network, Travis and Carol […]

In Memoriam: Professor Stephen Hawking

We woke this morning to the news that Professor Stephen Hawking has died, and add our voices to the great many that are mourning his passing. While ALS did not define Professor Hawking, he lived with it for more than 50 years and was active in raising awareness for the disease while at the same […]

The ALS Association Partners with the Motor Neurone Disease Association and the ALS Society of Canada to Establish the ALS Reproducible Antibody Platform

Washington, D.C. (March 8, 2018) – The ALS Association, in partnership with the Motor Neurone Disease Association (MND Association) and the ALS Society of Canada, is pleased to announce $600,000 in funding to support the ALS Reproducible Antibody Platform (ALS-RAP). The funding will support the creation of an open-access pipeline to validate antibody research and […]

ALS Research Update, February 2018

ALS research is at a time of unprecedented advancement. New information on genes linked to ALS and the downstream effects of mutations in these genes has helped researchers to develop a roadmap of the biological pathways that are important in ALS and to gain a better understanding of this complex disease. With new advancements being […]

A Family Day message of hope, love and laughter

When you ask Helen Koehler’s friends to describe her, the response is unanimous: she is a happy, positive and upbeat woman with a permanent smile and a caring heart. To speak with Helen (better known as “Pebbles” to her friends and family) is to hear about a life full of laughter, adventure and an undying […]

Breaking a sweat for ALS research

If you’re looking to get involved in an ALS fundraiser in your community, look no further than Orangetheory Fitness! Beginning on February 15, 2018, Orangetheory Fitness will launch a campaign in each of their 70+ fitness studios across Canada to benefit the ALS Canada Research Program. At this time last year, Orangetheory Fitness facilities across […]

Leveraging scientific advancements and open science to study ALS progression

ALS is a disease that gradually paralyzes people as motor neurons lose their ability to communicate with the muscles of the body and eventually die. But the problems are not only caused by changes inside motor neurons: the cellular environment around the motor neurons can contribute significantly to disease progression. Microglia are the immune cells […]

Could studying yeast help to answer questions about how ALS progresses?

If you look at a picture of a cell in a science textbook, the internal structures look static and neatly organized. But living cells are bustling with numerous processes, converting nutrients into energy and making proteins that the body’s tissues and organs need to function and grow. Proteins must fold into specific 3D shapes so […]

Could touchscreen technology improve testing for cognitive impairment in ALS?

Frontotemporal dementia (FTD) is a group of disorders caused by nerve cell loss in areas of the brain responsible for managing cognitive functions and voluntary movement. By itself, FTD, which is the second most common form of dementia after Alzheimer’s disease, can cause memory issues and attention problems, and impair cognitive flexibility — the ability […]

Comparing DNA profiles of Canadians with a similar heritage

Deep inside the nucleus of every cell in the body, DNA carries the master blueprint—the full set of genetic instructions needed for the body to grow, live and reproduce. DNA looks like a twisted ladder made from 3.2 billion pairs of building blocks that join to make up the rungs of the ladder. A complete […]