The diagnosis of ALS, like a train that has to change tracks suddenly, imposes a change of direction on one’s own life and those of one’s loved ones. Unlike retirement, where it is possible to plan and choose the direction of one’s new life outside of work, ALS is an
There are numerous clinical trials now ongoing with therapies targeting the genetic forms of ALS.
This webinar aims to provide information on genetics in ALS, the role of a genetic counsellor, considerations for genetic testing in ALS, and how therapies can target the genetic forms of ALS.
If the
Medical assistance in dying is an exceptional intervention. The use of this treatment is strictly supervised and marked out by law. However, the law has evolved in recent years. Learn more by listening to this conference given by Hélène Guay, B.C.L., LL.M on September 13, 2021.
If the video
We are pleased to present this bilingual presentation on current ALS Research, held on June 15th, 2021. A Q&A follows the conference. The conference was hosted by Dr. Richard Robitaille.
The first part of this presentation, provided by Anita Mehta, addresses ALS and the long-term implications (including death). In addition, it addresses the concepts and philosophy central to Palliative Care and some common misconceptions. The application and implications of Palliative Care to ALS population is discussed. Finally, family caregiver implications
Me Hélène Guay dirige un cabinet juridique de litige et représente des victimes d’erreurs médicales ou leurs familles, et des personnes qui font l’objet de demandes ayant trait à leur capacité ou à leur intégrité. Elle intercède en faveur du respect des droits des personnes devant les instances administratives (plaintes
We are pleased to present this bilingual presentation on current ALS Research, held on February 24th, 2021. A Q&A follows the conference.
Speakers:
1. Dr. Richard Robitaille, PhD, Full Professor, Neurosciences Department, Université de Montréal
2. Dr. Angela Genge, Neurologist and Director of the ALS Clinic and the Clinical Research
The Canadian ALS Research Network (CALS) offers you an explanatory document in which you will find the answers to the following questions:
Is the vaccine safe?
Should people living with ALS be considered a vulnerable population?
Should I receive the vaccine?
When and where can I get the vaccine?
⛄ During the confinement and all winter long, enjoy the beautiful weather and inspire your family and friends by building a snowman in honor of a loved one with ALS. Send us your story and photos at [email protected]!
🎨 For the chilly days indoors, have fun with the kids doing this
“With change comes adjustment and resilience.” – Odette Lacroix
Back in 2001, when my husband Pierre was diagnosed with ALS, the outlook for people living with the disease was very different. At the time, there was only one support group in the entire province, so we had to travel to
“The pandemic is taking a toll on caregivers” – Jocelyn Théorêt
Since the start of the pandemic, many people have asked me how I’ve been coping with the lockdown. My first instinct is always to say that it hasn’t made much difference to me, since I’m always at home helping
“Fighting with Positivity and Hope” – Elias Makos
When my 74-year-old mother began having mobility issues, my family assumed that old age was finally getting to my active mother who had always been a dynamo. But as different treatments failed to show any results, doctors began to suspect something far more
In this conference, Dr. Genevieve Matte, Neuroscience researcher at the CHUM Research Center, presents useful information on managing the new reality of telehealth in a COVID environment.
WATCH THE CONFERENCE (in English)
OUR LOCKDOWN IS REAL.
Locked inside my own body, confined to my wheelchair, deprived of my independence and freedom.
The COVID-19 pandemic and Amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, have a lot in common.
The pandemic has forced us all to isolate to some degree,
OUR VOICES ARE STRONGER TOGETHER TO ENSURE TIMELY ACCESS TO ALS TREATMENT
Our ambassador Norman MacIsaac, living with ALS since 2014, continues his mission to make the voice of all people with ALS in Quebec and Canada heard by creating this petition for faster access to treatment for Amyotrophic Lateral
In this conference, Dr Angela Genge, Director and Neurologist at the Neuro’s Clinical Research Unit, presents the main results of research on cannabis used for medical purposes for the treatment of certain symptoms linked to Amyotrophic Lateral Sclerosis (ALS).
WATCH THE CONFERENCE (in English)
Click here to view
ADAPTED TRAVEL IN QUEBEC AND ELSEWHERE IN THE WORLD!
Travelling can sometimes be a headache for someone with a loss of autonomy, but with a little planning it can be a great source of pleasure! This conference will provide you with the necessary tools to organize a trip that meets
We are pleased to present a bilingual presentation on Current ALS Research and an update on ongoing clinical trials, held on June 16, 2020. A short Question and Answer Period will follow the conference.
Speakers:
1. Dr. Richard Robitaille, PhD, Full Professor, Neurosciences Department, Université de Montréal
2. Dr. Angela
Webinair by Kristiana Salmon, BSc, EMBA, Assistant Manager, Clinical Research Unit at The Neuro( Montreal Neurological Institute/Hospital)
After completing a Bachelor of Science in Microbiology and Immunology at McGill University, Kristiana Salmon joined the Clinical Research Unit (CRU) of the Montreal Neurological Institute and Hospital (MNI/H) as a clinical research
COVID-19: The ALS Society of Quebec ensures the continuity of its programs and services
We know that this is a concerning time for many and we want to assure you that we are here for you. The safety of our families touched by ALS, our staff, volunteers and the public
Press release
For immediate release
MONTRÉAL, Oct. 31, 2019 /CNW Telbec/ – This year, National Caregiver Week (NCW) is happening against an especially exciting backdrop in which the very first national policy for Quebec caregivers is under development. The partners of the TCNA are thrilled to be able to highlight caregivers, their
Press release
For immediate release
PJ Stock Competes in The Battle of the Blades in support of ALS
Montreal, September 18th, 2019- As of September 19th, former NHLer and television hockey broadcaster PJ Stock will take part in the 5th season of CBC’s Battle of the Blades,
Press release
For immediate release
Montreal, September 16th, 2019 – Under a bright sunlight, nearly 900 participants and volunteers gathered at Parc Maisonneuve for the 19th Montreal Walk to End ALS. While some were walking in honor of a loved one living with Amyotrophic Lateral
Montreal, September 11th, 2019 – As of 9 :30am this Sunday, September 15th, families touched by Amyotrophic Lateral Sclerosis (ALS), researchers and the ALS Society of Quebec’s team will rally at Parc Maisonneuve as part of a symbolic walk in memory and in honor of Quebecers touched by Lou Gehrig’s disease.
Montreal, August 28th, 2019 – From August 23rd to 25th, more than 200 cyclists and volunteers gathered at Auberge Godefroy in Bécancour for the 12th edition of the Ride to Fight ALS powered by TELUS Health, the only annual cycling event supporting the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec.
News release
For immediate release
More than 200 cyclists will ride to fight amyotrophic lateral sclerosis in the Centre-du-Québec and Mauricie regions
Montreal, July 3rd 2019 – From August 23rd to the 25th, more than 200 cyclists and volunteers will be joining the 12th edition of the
July 4th, 2019, marks the 80th anniversary of New York Yankee Lou Gehrig’s famous farewell speech. Despite decades of research, ALS remains a devastating diagnosis. As the search for a cure and support for families continue, we remain inspired by Gehrig’s bravery, and the words from his historic 1939 speech.
From August 23 to 25, nearly 250 cyclists and volunteers will gather at Auberge Godefroy in Trois-Rivières for the 12th edition of the Ride to Fight ALS powered by TELUS Health. Since 2008, the cycling challenge has generated more than $2.3 million in support of the ALS Society of Quebec.
United in the fight against ALS
Just under two years ago, Chantal Lanthier crossed paths with someone who very quickly became a dear friend: Denise St Pierre, who’s dedicated herself heart and soul over the past few years to supporting the cause of ALS. With a singular commitment, Denise
In August 2018, Isabelle Lessard and her daughter, Maria, then 14, participated in the Ride to Fight ALS for the first time, a deeply moving experience. Their husband and father, Vincent, was diagnosed with ALS in 2015. Since then, Isabelle has been actively supporting the cause, by co-founding the Vincent
You are a game changer
It’s hard to win against a tough opponent like Amyotrophic Lateral Sclerosis (ALS), but the actions you took in the past year changed the rules of the game. You changed the lives of families touched by ALS by supporting personalized programs and services for those
Engaging the dialogue with the government and the general public
Making game-changing progress means reaching out to Quebecers and government authorities to raise awareness for ALS and the realities and challenges that people touched by the disease have to face.
“I want to urge governments to pledge their support
Bridging the gap between families and the research community
Guy Aubert’s hope for the future was shaken to the core after he was diagnosed with ALS in March 2018. But the Victoriaville man’s hope was restored by Dr. Richard Robitaille and his ALS research team. He and his wife, along
Offering personalized support across the province
Nothing can prepare someone for living with ALS, but thanks to your donations, our team can maintain and create new ways to support Quebec families touched by ALS throughout the province and at every stage of the illness.
Programs
As the holidays approach, we’re often inclined to look back on the past year. What were the highlights? What are we thankful for? What do we want for the coming year? We asked members of the ALS community to share their thoughts about the year drawing to a close.
When
As the holidays approach, we’re often inclined to look back on the past year. What were the highlights? What are we thankful for? What do we want for the coming year? We asked members of the ALS community to share their thoughts about the year drawing to a close.
On
As the holidays approach, we’re often inclined to look back on the past year. What were the highlights? What are we thankful for? What do we want for the coming year? We asked members of the ALS community to share their thoughts about the year drawing to a close.
It
As the holidays approach, we’re often inclined to look back on the past year. What were the highlights? What are we thankful for? What do we want for the coming year? We asked members of the ALS community to share their thoughts about the year drawing to a close.
As the holidays approach, we’re often inclined to look back on the past year. What were the highlights? What are we thankful for? What do we want for the coming year? We asked members of the ALS community to share their thoughts about the year drawing to a close. Living
Montreal, Thursday, November 15, 2018 –On this National Philanthropy Day, Vincent Bourque and his wife, Isabelle Lessard, are pleased to announce the launch of the Vincent Bourque Foundation, which they hope will help to eliminate Amyotrophic Lateral Sclerosis (ALS) once and for all, as well as provide support to
FOR IMMEDIATE RELEASE
Montreal, Thursday, November 8, 2018 – With the financial support of L’Appui national pour les proches aidants d’aînés and the collaboration of McGill University’s Steinberg Centre for Simulation and Interactive Learning (SCSIL), the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec is proud to launch the virtual
For immediate release
Montreal, October 29, 2018 – On the occasion of National Caregiver Week 2018, a dozen Quebec organizations working with caregivers are joining forces in an unprecedented effort and launching an awareness campaign under the slogan: Because we will all be caregivers.
From November 4 to 10, 2018,
Montreal, September 25th 2018- On Sunday September 16th, over 800 participants gathered at Maisonneuve Park for the 18th edition of the Walk for ALS in Montreal in support of the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec. Families touched by ALS, volunteers, researchers, Sabrina Cournoyer from the Salut Bonjour morning
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Montreal, September 10th, 2018 – This Sunday September 16th, the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec will team up with families touched by ALS and renowned ALS researchers as part of Montreal’s 18th Walk for ALS. Over 800 participants are
By Chantal Lanthier, living with ALS since 2013
Illusion
“You’re only as old as you feel!”
We’ve all heard that expression, right? Obviously, the older you get, the more your body starts to fail you. Yet, many of the older people I know tell me they feel “young inside” and
News release
For immediate release
$320,000 raised by the Ride and Hike to Fight ALS
Montreal, August 28th, 2018 – From August 24th to 26th, the 11th edition of the Ride to Fight ALS powered by TELUS Health in support of the Amyotrophic Lateral
By Chantal Lanthier, living with ALS since 2013
At a loss for words
I’m often told that my eyes speak volumes. Good thing, because I don’t have a voice anymore. Of all the losses I’ve had to go through over the past five years because of this disease, my voice
Are you more a beach person or a hiking person? When you think about relaxing, what comes to mind? I’m sure that whatever you pictured, it has something to do with nature. As for me, I can’t get enough of long walks in the woods. The time I spend surrounded
News release
For immediate release
A cycling and hiking event to fight ALS
in the Eastern Townships!
Montreal, August 1st, 2018 – From August 24th to 26th, 200 cyclists and volunteers will be joining the Ride to Fight ALS powered by TELUS Health in support of the Amyotrophic
Starting now until July 16th, at 8pm, bid on incredible and unique auction packages in support of Quebec families touched by ALS from the comfort of your home. Thanks to many generous donors, the online auction includes over a hundred diversified items to suit all tastes and budgets! Ready, set,
16 years ago, my mother was living with ALS. Today, as I write these words, I am optimistic and committed to doing everything I can, with you, to help further our ultimate mission forward: winning the fight against ALS.
It is an honor to be the new volunteer Chair
Together, we give hope.
ALS Quebec is proud to contribute to the ALS Canada Research Program, which invests in the best ALS research in Canada that will have significant impact on the global effort to create a future without ALS.
In 2017, 12 new research projects totalling $3 million were
Speaking out together
While a major part of our mission depends on our ability to listen to our members and their needs, our other key objectives include advocating for them, educating the public through various channels, and showing how your donations directly impact the lives of Quebec families living with ALS.
Improving the quality of life of Quebec families touched by ALS
Learning you have ALS is devastating. The diagnosis stirs up all kinds of emotions — fear, worry, sadness and anger. From diagnosis to end-of-life care and bereavement support, our dedicated team of psychosocial counsellors and coordinators provide compassionate and knowledgeable
Together, we stand united.
If there’s anything we’ve learned over the years, it’s that we can’t do it alone. Together, we’re the voice, the heart and the hope of the ALS community. Together, we’re able to accomplish great things. Every action, no matter how small, has a direct impact on
LAVAL, Québec (January 23, 2018) – The Laval Rocket is proud to announce Chris Terry’s commitment to the cause of the Amyotrophic Lateral Sclerosis Society of Quebec (ALS), more commonly known as Lou Gehrig’s disease. Terry has chosen to give two tickets to each
Thank you for giving families touched by ALS the greatest gift of all.
As the new year approaches, the ALS Society of Quebec would like to sincerely thank you for the generosity, confidence and support you’ve shown to the ALS community. Thank you for being part of Team ALS and
What if you woke up one day and were no longer independent?
What if the things you take for granted started slipping away, day after day, without warning? If talking, eating and moving around suddenly became things you had to think about and plan? That’s what people living with
Who are your closest friends?
They’re the remarkable people who have become part of your life, who understand you, listen to you, support you, and are always there for you, in good times and in bad. Friendship is a precious gift, a gift that people with ALS often unexpectedly
When was the last time you did something for yourself?
In the frenzy of daily life, we often forget about ourselves. Between work, kids, friends and family obligations, “me time” often falls to the bottom of the priority list. For the caregiver of someone living with ALS, downtime is
What’s the greatest gift you’ve ever received?
Whether it was a doll house, an electric train, a family vacation or a pet, you’ve surely unwrapped a gift in the past that made a lasting impression – a gift that you’d longed for and remember receiving like it was yesterday. This
2017 funding competition completes $20 million research partnership with the Brain Canada Foundation following the Ice Bucket Challenge
TORONTO, November 22, 2017 – Today, the ALS Society of Canada announced 12 exciting new research projects being funded in 2017 through the ALS Canada Research Program, which is supported by ALS Societies
SOURCE: UdeMNouvelles
Experiments conducted on worms, zebrafish, mice and, lastly, on human subjects in a limited clinical trial, conclude that pimozide may be effective in treating amyotrophic lateral sclerosis (ALS).
Researchers from the University of Montreal Hospital Research Centre (CRCHUM) and the Cumming School
Internship or volunteering opportunity
[Description available in French only]
Popularisée grâce au phénomène du Ice Bucket Challenge, la Société de la sclérose latérale amyotrophique (SLA) du Québec recherche un(e) stagiaire en communications. Le ou la stagiaire collaborera à des projets touchant les communications externes, les relations publiques et le marketing.
Internship or volunteering opportunity
[Description available in French only]
Tu veux apprendre ou perfectionner tes connaissances sur WordPress? Notre site web se refait une beauté et nous avons besoin de ton aide! Le jour du lancement approche, mais il y a encore beaucoup à faire. Deux périodes sont offertes :
They say we’re stronger together, and that’s what members of our community reminded us once again this year by putting together original and unique fundraising events. Thank you to all those who, just like us, are devoted to the cause and are willing to create awareness for ALS within their
A Breakthrough for Canadians Who Care
How do you create great health care solutions? Create a vision for optimal health care and then work backwards. For the team at Huddol that meant making sure that Canada’s 8.1 million family and friend caregivers could successfully navigate the care experience by relying
We’ll never forget August 2014.
It was after that turning point that we vowed to continue, every August, to recreate the wave of hope with which the Ice Bucket Challenge submerged the ALS community. One bucket of ice cold water at a time, the viral phenomenon led to millions of
On December 11, 2014, my brother Dean was diagnosed with ALS. He courageously battled the disease for 21 months. Dean died on September 23rd, 2016. He was 39-years old.
www.youtube.com/watch?v=NSoRhnEbJJk
On February 4th 2015, PJ Stock dedicated this video to his brother Dean (Courtesy of Sportsnet)
Dean’s and our family’s lives
On June 1st, Andrya Gallo lit a candle. Why? For her father Claudio, who fought a difficult battle against ALS for almost 5 ½ years.
December 30th 2010 was the day. Those of you that know about the disease, or football, would know that that was the day that Tony
On December 11, 2015, at age 60, Stella Wojas got the shock of her life when she woke up after four days in a coma due to respiratory failure only to be told she had amyotrophic lateral sclerosis (ALS), a disease she’ll never recover from. Despite an overwhelming feeling
Over the course of his 33 year career as a doctor, Jean-Pierre Canuel has certainly prescribed many doses of hope to his patients as he has guided them back to health. On the eve of his retirement as a physician however, the roles were reversed as he unwillingly became a
Like an ice cube, ALS melts away the muscles of those who are affected. Drop by drop, ALS will take their ability to talk, walk, swallow and eventually breathe before it takes their life away, in only 2 to 5 years. To this day, there is no effective treatment or
Words are not enough to describe Odette Lacroix’s tireless work for the Society, even now, at the age of 75! In recognition of her dedication, Odette received the Chantal Lanthier Award, awarded to a volunteer whose remarkable contribution to our mission makes him or her an inspiration to others.
From the
Since its 2008 inception, the Ride to Fight ALS has brought together hundreds of cyclists and has generated over 1.6 million dollars, thus making it one of the Society’s flagship events. Luc Vilandré, Dominic Delambre and Michel Simard are among a long list of committed volunteers who have managed to
In 2003, the letters “A-L-S” increasingly resonated with the daily life of Gilles Martel.
While a certain Jean Lepage raised funds for ALS in the Charlevoix region, his very good friend Ghislain, and his wife Angèle, were facing the consequences of the disease. “We had known them for 25, 30
September 18, 2013. Wilfrid, Nathalie Savard’s dad, learns he has ALS.
The following month, Nathalie contacts the ALS Society of Quebec and learns that the team needs help with the Baie-Comeau ALS Walk. She, along with her sisters and her uncle, immediately jump on the opportunity to get
Elyse Claude Léveillé, Paula Stone and Diane Tkalec have traveled very different roads. This did not keep them, however, from putting their individual skills in service of a common goal: offering the best possible support to families who live with ALS everywhere across the province. All three are volunteers
As an ambassador for HealthPartners and the Society, Annie Huard generously shares her story not only to raise ALS awareness, but also to give a voice to the hundreds of caregivers who often forget to take care of themselves.
In 2007, Annie’s world toppled over when her partner Claude,
All across Canada, thousands of people gather together and walk for ALS to demonstrate their support and solidarity towards families touched by the disease and Quebec is no exception. From the Outaouais to Rivière-du-Loup and then to Montreal, 10 ALS Walks have taken place across the province to raise a
The Society is made up of many men and women who dedicate their time and effort to helping us achieve our mission. It’s thanks to the commitment and involvement of these active community members that we’re able to make an even bigger difference in the lives of people living with
“People should ride for ALS because it’s such an incredible feeling to help those who can’t ride and who’d give anything just to be on a bike, riding next to us. People living with ALS are the real superheroes.” –Simon Tooley, Ride to Fight ALS participant
For the second year
Investments in ALS research have always been a reason to be hopeful that one day there will be effective treatments for this devastating disease. As a result of generous donor contributions and our partnership with the ALS Society of Canada, we – and you! – helped to fund more than
Raising awareness for ALS is an integral part of our mission. By communicating with the public through a range of different platforms, we succeed in educating and informing people—and, above all, breaking the taboos—about ALS. As with the many other communications released throughout the year, that was the goal
As each case of ALS is different, our members and their needs are unique. Thanks to their feedback, we can adapt our programs and services to their reality. This information is essential in order to provide them with personalized support where and when they need it most.
When Jacques Régimbald, who was diagnosed with ALS in 2015, and his son, Martin, began raising money for the Walk for ALS in Laval, they had no idea just how big their efforts would pay off.
“When we first got started, we were aiming for $5,000, but after only three
People living with ALS are the strongest people I have ever met.
Even as their muscles fail them, one by one, day after day, their strength of character never wavers. And I’m amazed every day by their families’ profound courage and resiliency. Everyone we meet here at ALS Quebec
“Today, we want to give you a little respite and acknowledge your dedication towards your loved ones” says Leigh Stephens, psychosocial counsellor at the Society, setting the tone for the third edition of Caregiver Recognition Day as part of Caregivers Week. On Sunday, November 6th, approximately 30 caregivers
Le 9 novembre 2016
Les proches aidants peuvent consacrer jusqu’à une vingtaine d’heures par semaine à une personne souffrant d’une maladie neurologique évolutive. Vingt-huit pour cent d’entre eux sont en détresse, le double de la proportion des aidants qui s’occupent d’une personne atteinte d’un autre
Canada’s rising stars in ALS research receive more than $1 million from the ALS Canada Research Program and Brain Canada
Three young investigators are pursuing ALS research thanks to funds raised through the Ice Bucket Challenge and matched by Brain Canada with financial support from Health Canada
The
More than ever this year, members of the community have taken initiatives to raise awareness and funds for the cause. We would like to acknowledge with profound gratitude the efforts and energy that these men and women put towards organizing exceptional events. It is thanks to them and through initiatives
Montreal, September 18th 2016- Today, nearly 1,000 participants gathered at the Parc Maisonneuve for the 16th edition of the Walk for ALS in Montreal in support of the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec. Families touched by the disease, volunteers and researchers have walked 4km and contributed to the
Montreal, September 14th, 2016 – The Amyotrophic Lateral Sclerosis (ALS) Society of Quebec will welcome on Sunday September 18th at Parc Maisonneuve over 1,000 participants, including families touched by ALS, players from the Montreal Alouettes and ALS researchers for this 16th annual Walk for ALS in Montreal. The Classics music
The 9th edition of the ALS Society of Quebec’s Ride to Fight ALS cycling challenge was an historic success, in terms of both number of participants and money raised. From August 26 to 28, 200 cyclists rode through the streets of Vaudreuil-Dorion and surroundings to support families touched by
Montreal, August 19, 2016 – The Amyotrophic Lateral Sclerosis (ALS) Society of Quebec is set to kick off the 9th Edition of the Ride to Fight ALS powered by TELUS Health cycling challenge, which will take place August 26-28. The dedicated participants will ride through the streets of Vaudreuil-Dorion and will
By CBC News | Health
The Ice Bucket Challenge that went viral two years ago, raising hundreds of millions of dollars, has helped identify a new gene behind the neurodegenerative disease ALS, or Lou Gehrig’s disease, researchers say.
The challenge involved people pouring ice-cold water over their heads, posting video
Saviez-vous que juin est le mois de sensibilisation à la SLA? Le Défi Ice Bucket a certes contribué à accroître la sensibilisation, mais nous avons besoin de vous pour poursuivre ce travail! Voici quelques idées toutes simples que vous, vos amis et votre famille pouvez facilement réaliser lors du Mois
June is ALS Awareness Month: So let’s break the ice! Why don’t we get to know each other better? We have so much in common.
We’re the kind of people who never give up. The friend, the parent, the child. We support our family, we tear down the walls
“Wow, wow, wow!!!! FREEDOM!!! What a terrific day. I’ve been imprisoned inside my body for years, and I never thought it possible to experience such a feeling of freedom…” says Ginette Beaudreault, who took part in a sailing excursion organized last summer at the Pointe Claire Yacht Club.
In 2001, Martin and Anick were planning their lives together, looking forward to great adventures, determined to climb their respective career ladders and to start a family. But fate had decided otherwise.
The Society expands its regional outreach
In 2015, one of the Society’s priorities was to extend its outreach to members across the province and to diversify its activities held outside the metropolitan area. As a result during this year, the Society traveled to thirteen administrative regions, organized more support groups
When we share our ideas, energy and philanthropic contributions we create a community that is truly stronger. Together, we’ve accomplished a great deal in 2015. We have made sustainable investments in our services and contributed to major research grants in Canada.
A CROP survey of our members, caregivers and healthcare
The Tony Proudfoot Training Fellowship in ALS research at the Montreal Neurological Institute and Hospital supports promising young scientists at the master’s, doctoral and post-doctoral level who wish to undertake research projects that specifically focus on ALS.
This year, the winner of the Tony Proudfoot Fellowship is Dr. Audrey Dangoumau.
(French only) La sclérose latérale amyotrophique est une maladie neurodégénérative affectant le système moteur. Les causes génétiques expliquent 20% des cas et de nombreux gènes ont été identifiés comme étant liés à la SLA lors de ces dernières années contribuant ainsi à une augmentation des connaissances des mécanismes de la maladie. Cependant la maladie demeure principalement sporadique (80% des cas environ) et les déclencheurs sont difficiles à identifier.
On November 19th, 2015, the ALS Society of Canada announced historical investments to further research towards a treatment and a cure. Learn more about the 34 research projects across the country.
ALS Research in Canada Receives Historic $15 Million Dollar Investment
Investments in ground-breaking research will support vision of making ALS treatable by 2024
Montreal (November 19, 2015) — On the anniversary of the announcement of the 2014 ALS Ice Bucket Challenge results and partnership between ALS Canada and Brain Canada,
From 1st to 7 November, the ALS Society of Quebec celebrates the National Caregiver Week
In the province of Quebec, there are about 1,500 caregivers who help a loved one living with amyotrophic lateral sclerosis. During this National Caregiver Week, we want to pay tribute to all caregiver, both past
For immediate release
Montreal, September 21, 2015
On Saturday September 19, about 1,000 walkers, volunteers and partners gathered at Park Maisonneuve for the 15th edition of the Walk for ALS in Montreal. Thanks to generous participants and donors, over $120,000 was raised!
The Montreal Alouettes Remember Tony Proudfoot
The
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Montreal, September 16, 2015
The Amyotrophic Lateral Sclerosis (ALS) Society of Quebec will welcome over 1,000 participants, including players from the Montreal Alouettes and ALS researchers on Saturday September 19th at Maisonneuve Park for the 15th annual Walk for ALS in Montreal. This year, the Society hopes
FOR IMMEDIATE RELEASE
Montreal, August 19, 2015 – The Amyotrophic Lateral Sclerosis (ALS) Society of Quebec will fire off the starting gun for the 8th edition of Ride to Fight ALS sponsored by TELUS Health, a cycling competition being held from August 28 to 30, during which dedicated participants
SOURCE: mtltimes.ca
Dean Stock with his wife Paula, kids: Luke,Grace and Sophie. Dean was diagnosed with ALS in December 2014 and as a family, they decided to help raise awareness and funds by taking part in the Society’s first PSA
Last August, social media blew up with
We are very proud to present our very first awareness Public Service Annoucement (PSA). Featuring the Stock family, the video aims to show the disease behind the ice cubes.
Like so many others, Dean and Paula Stock and their three young children did the Ice Bucket Challenge in August 2014 to
Montreal, July 31, 2015 – A year after the spectacularly popular Ice Bucket Challenge, the world-wide ALS community is reviving the fundraiser in order to raise much needed funds for amyotrophic lateral sclerosis (ALS ), a rapidly progressive and invariably fatal disease. Surrounded by people living with ALS, researchers and partners,
SOURCE: CJAD NEWS
Last year, former habs forward and media personality PJ Stock took part in the Ice Bucket Challenge, unaware that just a few months later, his brother Dean would be diagnosed with ALS.
Stock says the challenge represents more than just a brief
SOURCE: CTV Montreal
The ALS Society of Quebec is trying to make the ice bucket challenge a viral phenomenon for the second straight year.
The Ice Bucket Challenge raises money for research into neuromuscular disease ALS. Also known as Lou Gehrig’s Disease, it’s characterized by the death of nerve
Supporting families as they navigate the progression of ALS
Last fall, The ALS Society of Quebec was pleased to announce that over 79,000 generous Quebecers raised $2,660 000 through the Ice Bucket Challenge. The funds are being allocated to two important areas: the national research program with ALS Canada, in which
News from Montreal Neurological Institute and Hospital
As a major Canadian centre for amyotrophic lateral sclerosis (ALS) research and treatment, the Montreal Neurological Institute and Hospital – The Neuro, invites the public and the media to learn more about the disease and current research and treatments, to donate money for ALS
Every year, ALS Canada brings the Canadian ALS research community together for the ALS Canada Research Forum. This event is a venue for researchers to share ideas, form new collaborations and connect to the ALS community.
This year, the Forum
MARKHAM April 21, 2015/CNW – ALS Canada is pleased the Government of Canada has decided to extend the Compassionate Care Benefit (CCB) from 6 to 26 weeks – a benefit that will directly provide much needed financial assistance to Canadian families caring for a loved one with the terminal disease,
Message from ALS Canada’s Director of Research
Download ALS Canada Research Impact Report
The past year has been a time of continued optimism and momentum in ALS research, complete transformation of the ALS Canada Research Program and unprecedented levels of awareness and fundraising. As we look back on the last 12 months, the
To All Our Volunteers…Thank You!
You help with our events, you play a critical role in our administration, , you immortalize our events by taking breathtaking pictures, you come to the office on a regular basis to perform a variety of administrative tasks, you provide a warm smile
Putting the Ice Bucket Challenge Funds to work
The ALS Society of Canada announced the team led by Dr. Lawrence Korngut, MD at the University of Calgary received the first Arthur J. Hudson Translational Team Grant. The team also includes Dr. Lorne Zinman, MD from Sunnybrook Health Sciences Centre
We are profoundly grateful towards the Government of Quebec for the $74,491 donation made possible though the 2014 Entraide campaign. Thank you to all employees and retired employees for your generosity!
On picture, from left to right : Pascale Despins, Director for Entraide, Odette Lacroix, volunteer, ALS Society of Quebec
Message from the President of the Board and the Executive Director
As we look back on the past year, we can’t help but feel overwhelmed with how much we’ve accomplished. We remain astonished by the incredible success of the ALS Ice Bucket Challenge. This phenomenal fundraising campaign inspired by
MARKHAM, ON, Jan. 26, 2015 /CNW/ – The ALS Society of Canada, in partnership with Brain Canada and the Government of Canada, are proud to announce the first research grant from the funds raised from the ALS Ice Bucket Challenge. The Arthur J. Hudson Translational Team Grant will be used
Wishing you a bucket full of peace, love and happiness this Holiday Season!
Thank you for making 2014 such a wonderful year!
From all of us at the ALS Society of Quebec
This image is graciously offered by Mylène Duchesneau in memory of her father.
The ALS Canada Research program was established to fund the top ALS research in Canada to meet ALS Canada’s strategic vision to find a treatment for ALS. Thanks to your support, we are pleased to announce the recipients of the 2014 ALS Canada-Brain Canada Discovery Grants.
This announcement marks the first
Putting Ice Bucket Challenge donations to work
Supporting families as they navigate the progression of ALS
The Ice Bucket Challenge was lightening in a bottle. Thousands of people videotaped themselves dumping frigid water over their heads. It was an Internet sensation. It was fun, funny and quirky. But more
ALS SOCIETIES ACROSS CANADA COMMIT $10 MILLION TO ALS RESEARCH AND ANNOUNCE NEW PARTNERSHIP WITH BRAIN CANADA FOR MATCHING RESEARCH FUNDING
OTTAWA (November 19, 2014) – ALS Societies across Canada are pleased to announce the ALS Ice Bucket Challenge in Canada raised $16.2 million due to the generosity of more
The Ice Bucket Challenge was a perfect storm of social media, celebrity and grass-roots philanthropy, producing an unprecedented viral social engagement during the dog days of summer.
The summer of 2014 will be remembered as the Ice Bucket Challenge Phenomenon that brought our families and the community together across the
In terms of numbers, the Ice Bucket Challenge was one of the most successful awareness campaigns in Canadian history. But there’s more to the numbers than the $16,2 million Canadians donated to the cause: the campaign also generated calls and emails from hundreds of people eager to support the
Numerous fundraisers took the plunge this summer
PK Subban and Oprah did it. So did Leonardo DiCaprio and Bill Gates. Thousands of Quebecers did it too! They took the Ice Bucket Challenge this summer sousing themselves with ice-cold water. Who knew you could have so much fun in support of
Ice Bucket Challenge : $16,2 million in Canada
Donations for research doubled
ALS Societies across Canada are pleased to announce the ALS Ice Bucket Challenge in Canada raised $16.2 million due to the generosity of more than 260,000 Canadians. This represents a record for donations to the ALS community in support
By CBC News | Health
The Ice Bucket Challenge that went viral two years ago, raising hundreds of millions of dollars, has helped identify a new gene behind the neurodegenerative disease ALS, or Lou Gehrig’s disease, researchers say.
The challenge involved people pouring ice-cold water over their heads, posting video
Maurice Desjardins is closely touched by ALS: his cousin, Daniel was diagnosed just over a year ago. Inspired by Daniel, Maurice composed a symphonic melody in his honour. Let yourself be carried away by the delicate notes of the piano, violons and flute symbolising the hope to conquer.
Tittle: HOPE
One behalf of everyone touched by ALS, we want to say thank you. Thank you for the donation you made as part of the Ice bucket Challenge. Thank you for the empathy and compassion you showed us. This unprecedented viral movement you took part in not only raised
Montreal, September 23, 2014 The Amyotrophic Lateral Sclerosis (ALS) Society of Quebec raised $179,000 this Saturday at the 14th Walk for ALS in Montreal. The Walk was the seventh of eight held across the province. In total, over $296,000 was raised in Quebec thanks to the Walks for
Montreal, September 19, 2014 This Saturday, the ALS Society of Quebec will welcome players from the Montreal Alouettes, ALS researchers and some 1,000 walkers at Maisonneuve Park for the 14th annual Walk for ALS in Montreal.
The Alouettes to Help Tackle ALS
The Montreal Alouettes are proud to reaffirm
Montréal, mardi 16 septembre 2014 – La 7e édition du Roulez pour la SLA, organisé par la Société de la sclérose latérale amyotrophique (SLA) du Québec a été un véritable succès, totalisant 232 000 $. Une centaine de cyclistes ont bravé le froid, le vent et la pluie dans les Laurentides
Bonjour à tous, nouveaux et anciens cyclistes. Cette année, encore pour certains, vous avez décidé de roulez pour la SLA.
Je vous ai bien vu; vous êtes prêts: monture scintillante, pneus bien gonflés, mollets bien musclés, foufounnes bien padées et imperméables bien boutonnés. Vous êtes prêts à affronter, avec
Estérel, jeudi 11 septembre 2014 – La Société de la sclérose latérale amyotrophique (SLA) du Québec lancera le coup de départ de la 7e édition du Roulez pour la SLA, un défi cycliste de trois jours auquel participeront près de 120 cyclistes. Du 12 au 14 septembre, des gens
MONTREAL, Aug. 28, 2014 – The Amyotrophic Lateral Sclerosis (ALS) Society of Quebec is pleased to announce that donations received thanks to the Ice Bucket Challenge have reached $1,100,000. Since the viral sensation reached the province on August 10th, over 39,000 Quebecers have taken the challenge of dumping a bucket of
UPDATE: 2014-09-11 at 10AM – $1,550,000 raised through the Ice Bucket Challenge.
The ALS Society of Quebec is pleased to announce that donations from August 10 through spetember 11 2014 have reached an all-time high, thanks to the ALS Ice Bucket Challenge! Over 50 000 generous people made a donation online
They take a look back at a decade of accomplishments
It’s hard to believe but it has been 10 years since Véronique Pignatelli, Director of Services and Programs and I joined the ALS Society of Quebec. It’s been a privileged to work alongside such an amazing team and a blessing
The Neuro’s ALS Program is a model of compassionate care
The Amyotrophic Lateral Sclerosis (ALS) Program at the Montreal Neurological Institute and Hospital – The Neuro has an interdisciplinary team that delivers outstanding, tailor-made care to meet the needs of patients. The program which integrates research and patient care
Research Profile: Dr. Jean-Pierre Julien
Vaccination is a preventative medical technique designed to assist the body in developing an immune response to specific infections. Exposure to weakened versions of these infections causes our body to produce substances called antibodies that neutralize the infection and stand ready to prevent illness should
Researchers from around the world gather in Montreal
When he helped spearhead the organization of the first ALS Symposium on behalf of the Fondation André Delambre ten years ago, Dr. Jean-Pierre Julien hoped to do more than simply gather like-minded researchers for two days of speeches and presentations. The
Chantal Lanthier spoke with LaPresse+ to defend disabled people’s rights. “Creating respite and housing resources for severely disabled people is a moral obligation for the Government.”
Click here to view the video
An ALS diagnosis comes as a shock and throws the lives of
75 years ago, New-York Yankee’s star player, Lou Gehrig, stood in front of 62,000 fans and spoke one of the most poignant speeches in the history of sports.
“For the past two weeks you have been reading about the bad break I got. Yet today I consider myself the
“For the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth”– Lou Gehrig, July 4, 1939
Almost 75 years ago, Lou Gehrig, one of baseball’s greatest players, stood in front
In Memoriam Day
The ALS Society of Québec launched ALS Awareness Month with the first edition of an In Memoriam day. The goal of this special day was to celebrate the lives of people who fought bravely against the fatal neurodegenerative disease. Yves Lafleur, psychosocial counsellor at the Society
David Taylor,Director of Research at the ALS Society of Canada announced Dr. Claire Leblond as the 2014 recipient of the Tim E. Noël Fellowship in ALS Research. Dr. Leblond is currently a postdoctoral fellow in the lab of Dr. Guy Rouleau at the Montreal Neurological Institute, McGill University and will be
Dr. Guy Rouleau, Director of the Montreal Neurological Institute and Hospital -The Neuro, at McGill University and McGill University Health Centre, is being awarded the Prix d’excellence 2014 by the Collège des médecins du Québec, for his outstanding contributions to neurogenetics and medicine. Dr. Rouleau accepts the award today at
Maurice Leclerc considers himself ‘lucky’. The 84-year old has five children and four grandchildren and numerous close friends. He was married for 25 years to the ‘loveliest person’ he’s ever met. He loved his job so much he worked till age 77.
A year into retirement, Maurice was diagnosed with amyotrophic
Caring for someone with amyotrophic lateral sclerosis (ALS) isn’t easy. It is a 24-hour a day, seven-day a week job that takes a tremendous physical and emotional toll on caregivers. To help caregivers cope, the ALS Society of Quebec is expanding the services available to those looking after a
Lucille Ball famously said, “If you want something done, ask a busy person to do it.” The axiom applies to Dr. Michael Strong. The title on his business card reads: Dean, Schulich School of Medicine and Dentistry, Distinguished University Professor, Professor, Department of Clinical Neurological Sciences, Arthur J Hudson
Did you know that April 6-12 is National Volunteer Week?
We appreciate, more than words can express, all of the time and energy that you give to the Society so that we can fulfill our mission to raise funds for research and to support families living with ALS.
Harvard stem cell scientists have discovered that a recently approved medication for epilepsy might be a meaningful treatment foramyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, a uniformly fatal neurodegenerative disorder. The researchers are now collaborating with Massachusetts General Hospital (MGH) to design an initial clinical trial testing
The ALS Society of Quebec is thrilled to have taken part in this past weekend’s ‘Baseball Fever’ in Montreal by hosting the silent auction at the Montreal Baseball Projects Gala honoring the 1994 Expos. $30,000 was raised to support our mission thanks to our generous auction item donors and
The ALS Society of Quebec would like to extend its heartfelt thanks to employees and retired employees of Quebec Public Service for their generosity at the 2013 “Campagne d’Entraide“.
This donation helps the Society to fullfill its mission of offering services to families across the province.
On March 18,
Lean On Me
It’s no secret navigating the health care system can be challenging. It’s like a giant maze with care offered over here, equipment available over there, and support services provided someplace else. It can be confusing, frustrating and completely overwhelming especially if you or a loved one
Research is in her blood
Heather Durham, PhD won’t be paddling off in a kayak any time soon. The researcher who focuses primarily on understanding amyotrophic lateral sclerosis (ALS) has no intention of hanging up her lab coat when she turns 65, the traditional age of retirement. While she might enjoy
ALS Society of Quebec launches the Exchange teleconferences
ALS Society of Quebec in partnership with the Island of Montreal ALS committee recently launched the Exchange, a series of free teleconferences designed to provide information and facilitate discussions between health professionals caring for patients with amyotrophic lateral sclerosis (ALS). Held
Dr. Heather Durham, PhD, researcher and professor at the Montreal Neurological Institute (MNI) of McGill University is co-organizer of the 2nd Quebec-France ALS/FTD conference to be held at the MNI, March 20-21, 2014. The inaugural conference was held in 2012 at the Institute du cerveau et de la moelle
(Article in French only) Cette découverte liée aux protéines TDP-43 et FUS, présentes à la fois dans la SLA et la démence, pourrait favoriser la mise au point de nouveaux médicaments en plus d’améliorer les effets du riluzole, seul médicament approuvé à ce jour et destiné à freiner la
The holiday season is a time to get together with friends and families and to share memories, gossip and a laugh or two. However, when a loved is living with ALS the holidays can be a precious yet painful time of year.
“The holidays can be a very emotional
The ALS Society of Quebec has a Technical Aid and Financial Assistance Program to support its members. These programs help defray the cost of purchase or rental of equipment and services. Your donations will directly improve the quality of life of people with ALS and their caregivers. Click here to
Mutations in the gene for an enzyme called valosin-containing protein (VCP) are known to directly cause a disease called Inclusion Body Myopathy associated with Paget’s disease of bone and frontotemporal dementia.
More recently, mutations in VCP have been associated with sporadic ALS in some individuals. To examine this association in
Today Biogen Idec reported results from a Phase 3 trial investigating dexpramipexole (dex) in people with amyotrophic lateral sclerosis (ALS). The company said that the trial failed to show slowing of functional decline or improved survival and failed to demonstrate efficacy. Based on these results, the company is discontinuing development
From left to right : Drs. Steve Perrin, Stanley Appel, Nobel Laureate Stanley Prusiner and Jean-Pierre Julien
Quebec City – The 9th Annual Symposium on ALS Fondation André-Delambre was held on September 20 and 21 at Laval University in Quebec City. The organizers of the Symposium, Jean-Pierre Julien and
[French only] Montréal, le 11 septembre 2013 – Les médias sont invités au lancement de la 6e édition du Roulez pour la SLA à l’hôtel Sacacomie à Saint-Alexis-des-Monts. Cet événement à vélo unique de trois jours se tiendra du 13 au 15 septembre 2013 en Mauricie. La conférence
[French only] Venez accueillir les cyclistes à votre hôtel de ville!
Montréal, le 5 septembre 2013 – La Société de la Sclérose latérale amyotrophique du Québec, en collaboration avec la Ville de Boucherville, vous convie à la 4e édition du tour cycliste Roulez pour la SLA – Édition en