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)
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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
The Quebec government and its’ population favor remaining at home for as long as possible, even until end of life. This is a very important paradigm shift that requires an increase in dedicated home care resources. This situation creates a number of issues for both the person who is ill,
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.
PRESS RELEASE
FOR IMMEDIATE RELEASE
Ice Bucket Challenge: 5 years later, the community commemorates the impacts of the wave
Montreal, July 31st, 2019 – Summer of 2014 marks the 5th anniversary of the ALS Ice Bucket Challenge. This worldwide phenomenon, created by the community touched by Amyotrophic Lateral Sclerosis
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.
Planning and preparing for a trip is a good opportunity to break away from the daily routine which can be at times burdensome. Traveling is also an excellent way to be exposed to other realities, to relax, get to know other people and to go beyond our comfort zone. You
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
Driving is an important activity for many people, it is often associated with a sense of independence. It is a complex task that requires adequate physical, cognitive/perceptual and functional abilities. ALS is an illness that can affect these abilities, therefore having an impact on one’s ability to drive safely.
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.
This 15 minute webcast developed by the Canada Mortgage and Housing Corporation provides viewers with ideas for accesible design, adaptations for changing needs, and examples of designs and adaptations. This video is uniquely offered in English.
Accessible Housing By Design – Canada Mortgage and Housing Corporation
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
Services Québec-Info-Social 811
Are you experiencing a loss of autonomy? We invite you to consult the following guide. You will find information on government programs and services for which you may be eligible. The caregivers who support you will also find useful information.
In addition, if your loss of autonomy is related to
Éducaloi’s mission is to inform Quebecers about their legal rights and responsibilities in language that makes the law easy to understand.
ÉDUCALOI
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
This presentation is aimed at helping caregivers understand the range of services available to seniors through the CLSCs, as well as the current role and functioning of their home care services. The goal is to help caregivers get the support they need by rendering CLSC resources more accessible and by
Helpful Amyotrophic lateral sclerosis (ALS) information about monitoring and managing ALS for patients and caregivers.
ALS PATHWAYS
Getting Started Brochure (PDF)
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,
Text with 9-1-1 is available to you if you are part of the deaf, deafened, hard of hearing or speech impaired (DHHSI) community in Quebec and parts of Canada.
Text with 9-1-1
L’Appui pour les proches aidants d’aînés was created in 2009 to help improve the quality of life of those providing care to older adults by facilitating their daily tasks and ensuring that they take full advantage of available resources.
L’Appui
This comprehensive guide offers an overview of what ALS is, tips and tools for people with ALS and their caregivers, disease management and assistive equipment information, legal and financial considerations, and more.
GUIDE
Advance Care Planning involves talking with others about your wishes and values for your future health care, and deciding on someone to speak on your behalf if you can’t – your mandatary. Access free resources: videos, workbooks/guides, and conversation starters.
ADVANCE CARE PLANNING DAY CAMPAIGN KIT
Helpful Amyotrophic lateral sclerosis (ALS) information about monitoring and managing ALS for patients and caregivers.
ALS PATHWAYS
Getting Started Brochure (PDF)
Helpful Amyotrophic lateral sclerosis (ALS) information about monitoring and managing ALS for patients and caregivers.
ALS PATHWAYS
As March 20th marks an important day: National Dietitians Day and World Oral Health Day, the ALS Society of Quebec has been hard at work updating, a soon to be released, Nutritional Toolkit called, “Culinary Caring”. It will include new content to help families address the changing needs in nutrition
Canadian Virtual Hospice
MyGrief.ca can help you understand grief and work through some of the difficult issues you may be facing. MyGrief.ca has been developed by a team of national and international grief experts together with people who have experienced significant loss in their own lives. It is not meant to replace professional
The CHPCA is the national voice for Hospice Palliative Care in Canada. Advancing and advocating for quality end-of-life/hospice palliative care in Canada, its work includes public policy, public education and awareness. Established in 1991, its volunteer Board of Directors is composed of hospice palliative care workers and volunteers from Canadian
KidsGrief.ca is a free online resource that helps parents support their children when someone in their life is dying or has died. It equips parents with the words and confidence needed to help children grieve life’s losses in healthy ways.
KidsGrief.ca
Caregiver Action Network
Founded in the late 1970s, Family Caregiver Alliance(FCA) is the first community-based non
profit organization in the United States of America to address the needs of families and friends providing long-term care for loved ones at home. The services, education programs, and resources FCA provides are designed with caregivers’ needs
An illness like ALS brings about many changes and affects every member of the family. Children and teens may have concerns, fears and questions they don’t know how to cope with or articulate. The following resources are designed specially to help children and teens who have a family member living
ALS Association (United States of America) – ALS Care Resource Materials and Information
ALS Association (United States of America) – Resources for Caregivers
This booklet is designed for children and will address some of the questions they may have about ALS including: What is ALS? What parts of the body are affected? What causes it? Will I get it? Do people with ALS get better? It will also help them address what they
This guide is for general practitioners who have a patient who has been diagnosed with ALS, or who is suspected to have ALS. It will assist you in recognizing the signs and symptoms of ALS, understanding ALS progression, symptom management, changing patient needs, the importance of interdisciplinary ALS care, and
The Northeastern ALS Consortium’s (NEALS) mission is to translate scientific advances into new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and Motor Neuron Disease (MND) as rapidly as possible. To achieve their goal, NEALS functions as an academic research consortium, a contracted research organization, and a resource tool for
Approximately 3,000 people in Canada are living with ALS, so children may not be able to find support among their peers. This booklet includes helpful information provided by young people who know what it’s like to have a parent with ALS. They talk about their experiences, worries, and fears, and
This booklet aims to familiarize educators with ALS by providing a better understanding of what a student whose parent has ALS must cope with, and by suggesting how school personnel can be supportive not only while the disease progresses, but also during bereavement.
Talking with Young People About ALS
ALS Untangled
This checklist was developed by the “Table des Partenaires” Committee in 2012 and updated in September 2020. The aim of this tool is to help highlight information to be discussed with families living with an ALS or PLS diagnosis over the course of their illness.
Download the checklist:
In PDF
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
FOR IMMEDIATE RELEASE
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
This booklet is designed to help health care professionals reinforce with their patients the importance of considering family dynamics in the care and management of a person living with ALS, and in particular how to help young children understand the diagnosis and management of their parent’s illness.
Talking with
Écrit par Charles Goethals et Naïma Belalouz en 2016, ‘Mon papa la SLA et moi ’ est un livret qui est destiné aux enfants âgés de 2 à 6 ans et aide à entamer la conversation sur la SLA avec douceur.
Mon papa, la SLA et moi.
This guide aims to facilitate access to information about the programs offered to people with disabilities, their families and their caregivers. Among other things, it presents programs related to income support, home support, housing, employment, technical aids, childcare, education, transportation, recreation, sports, culture and community life. It also describes Québec’s
Ce guide présente les mesures fiscales provinciales et fédérales à l’intention des personnes handicapées, de leur famille et de leurs proches. Il est mis à jour chaque année dans le cadre de l’exercice de la déclaration de revenus des particuliers. La première partie du guide présente les mesures fiscales provinciales
This guide published by the CRA is for persons with disabilities and their supporting persons. It gives information on:
■ the criteria for the disability tax credit and how to apply
■ related tax credits you can claim on the income tax and benefit return
■ other disability-related information
This guide published by the CRA is for persons with medical expenses and their supporting family members. The guide gives information on eligible medical expenses you can claim on your tax return.
This guide uses plain language to explain the most common tax situations. The guide is for information only
Muscular Dystrophy Canada has collaborated with clinicians and allied health professionals from across Canada to produce a publication focused on respiratory care for people affected by neuromuscular disorders. With an emphasis on prevention and being informed, the document provides user-friendly descriptions and essential information for patients and families.
Guide
SWALLOW SAFELY is a book that presents in clear, non-technical language with illustrations how swallowing works normally, how things can go wrong, what symptoms to watch out for, and how to get help. It is your guide to knowing when something is wrong and what to do about it.
You
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
This resource provides information on how to deal with feelings of grief and loss following an ALS diagnosis and as the disease progresses. Grieving is a stressful process that may affect you in ways you didn’t anticipate. Gain the tools to learn how to better cope.
Coping with grief
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
This study report examines what employers, employees and their families can do to reduce work-life conflict. The report ends with a conclusion and recommendations chapter that summarizes the findings, outlines the policy implications and offers recommendations. This study was funded by Health Canada.
Reducing Work-Life Conflict: What Works? What
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
Québec.ca – Site officiel du gouvernement du Québec
Retraite Québec – Quebec Pension Plan
In this touching series, the hard work of caregivers is honored by sharing their stories and thanking them for all that they do.
Stories for caregivers
Service Canada-Employment Insurance Benfits and Leave
This book has received excellent reviews in The Lancet (the premier medical journal of Europe), in Muscle and Nerve (the official journal of the American Association of Electrodiagnostic Medicine), and in Neurology (the most widely-read neurology journal of the U.S.). Futura Publishing Company is continuing a program where ALS
Société de l’assurance automobile du Québec (SAAQ)
Services Québec- Road Vehicle Adaptation Program For People With Disabilities
Société d’adaptation du Québec – Residential Assistance Adaptation Program
Société d’adaptation du Québec – Residential Assistance Adaptation Program
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,
Planning and preparing for a trip is a good opportunity to break away from the daily routine which can be at times burdensome. Traveling is also an excellent way to be exposed to other realities, to relax, get to know other people, to go beyond our limits and face new
The Quebec National Program for Home Ventilatory Assistance (NPHVA) is dedicated to providing quality respiratory services and equipment in the comfort of your own home. Based at the McGill University Health Centre and affiliated with medical specialists in adult and pediatric health centres, our professionals are available 24 hours a
November 18, 2015. The coach of the Sherbrooke Bulldogs and former coach of the Vert et Or, James Benoit, is preparing to face his biggest opponent, on an unknown field: ALS. The next day, he wipes off the last tears that stream down his cheeks and decides to play the
ASSOCIATION PROFESSIONNELLE DES NUTRITIONNISTES EXPERTS EN DYSPHAGIE (APNED)
In the province of Quebec, there are laws and codes to comply with regarding the accessibility of buildings to disabled persons. Standards and strict rules also govern the installation and maintenance of certain pieces of equipment such as lifts.
Régie du bâtiment du Québec
Chambre des notaires du Québec
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
Le Protecteur Du Citoyen(Ombudsman) – Assemblée nationale Québec
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
Continuing to assist any person who is mourning the death of a loved one, the helpline previously managed by La Maison Monbourquette maintains the same telephone number and is available from 10am to 10pm – 365 days / year and is free.
FREE HELP LINE 1 888 LE DEUIL
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,
Tiziana di Rocco is a Speech-Language Pathologist at McGill University Health Centre. Her educational background includes a MSc(A) in Communication Sciences and Disorders from McGill University in Montreal, a B.A. with double major in Eng/Fre Translation and Italian Literature and a major in Linguistics, all from Concordia University, in Montreal.
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
Science and medicine in the family genes
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
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
Empathy is part of the Dupré family genetic make-up
It is safe to say Dr. Nicolas Dupré knows a thing or two about genetics. The focus of Dr. Dupré’s research is the search for genes associated with neurodegenerative diseases such as ALS. So, he is pretty confident when he jokingly predicts
My grandmother is my idol and a model of courage for her battle with ALS
ALS struck the Plamondon family in the 1990s, at a time when research was much less advanced than it is today. My story is much like that of the more than 3,000 families with one
I have always been a sportsman, but I had never touched a road bike before the first Ride for ALS
Hello, my name is Philippe Michaud and I will be taking part in the Ride for ALS fundraiser for the third consecutive year. My father, Robert Michaud, was diagnosed with
Maude Dufour and Daniel Malandruccolo, Team MM Racing (Ride for ALS)
It was in February 1998 that Jean Dufour’s life was turned upside-down. The support that he received from The ALS Society of Québec, the Ahuntsic CLSC, and from his family and friends helped make sure that the last three
I chose to ride as I needed to be part of a group that could help me better understand ALS
“I take part in the Ride to Fight ALS, for the cause,” says Guylaine Breault, who lost her father to Lou Gehrig’s disease. “I chose to ride as I needed
I want to do this, so others don’t have to suffer the living hell that my father endured for nearly two years
SO OTHERS CAN LIVE…
I believe that true leaders are dreamers: they dare to dream about things that feel impossible today, and they inspire others to do the
It’s by taking action that we can make a difference
Dear friends,
It is with much pride that I have served on The Amyotrophic Lateral Sclerosis (ALS) Society of Quebec’s Board of Directors for the last seven years and now as President.
As some of you may know, I have
By implicating myself in the fight against ALS, as I am simply contributing to our society.
Why do I “Ride for ALS”?
First because my father died of ALS in 2006, and second, because ALS is an unjust and cruel disease, that can afflict anyone at any time. This disease
Helping afflicted people and their family
I have been a volunteer at the ALS Society of Quebec for many years and I always take pleasure working with the team and offering my modest participation.
The ALS Society is an extraordinary organism thanks to every member of the team – from the
I live for my volunteer work, giving a little hope to people with ALS
In 2002, after being together for over 25 years, we had just started to enjoy life. One day, my wife, who shared my interest in hobbies like golf, hiking, and walking, told me nonchalantly that her
This is what I’ve been doing for the past 5 years
My path to volunteering at the ALS Society is probably a little different from most. Through listening to the Alouettes’ games broadcast on CJAD, I came to appreciate the intelligent and well-expressed comments of Tony Proudfoot.
When he was
The café Michel Richoz owns in a trendy, arts centric area of downtown Montreal contrasts greatly with the reality he lived for two and a half years of his life. The Arts Café buzzes with people. As jazz softly plays in the background nicely accompanying the stained glass and artistic
Les bienfaits que j’en retire sont de donner de petits moments de bonheur à des gens dépourvus
French Only
Depuis environ 6 ans, je fais du bénévolat auprès de la SLA étant donné que mon mari est décédé de cette maladie.
Il a créé sa propre fondation, qui a pour
If a person with ALS can come out and do the walk, then we can at least do the walk with them
“I have been doing the ALS walk in Charlevoix for 8 years now and I will keep doing it until there is a cure.”
“We are a small
To volunteer is to give freely and to expect nothing in return
I feel that I never truly volunteered before becoming involved with the cause of ALS. When I was younger, I joined social clubs in my town and took part in community activities, but once I starting working, my
It may not yet be too late for people living with ALS
The text I wrote describes my feelings about the disease that sadly took my brother on July 11, 2012, at the age of 43. I’d like to take this opportunity to praise my mother and everyone else whose incredible
When I retired in 2009, I became a volunteer for the ALS Society knowing full well what I was getting into
We at the ALS Society of Quebec are proud of all our volunteers. We’re shining a spotlight on one of these volunteers in each issue of the Bulletin. Daniel
I continue to be motivated, inspired, and fully committed to finding the “hope”
Sometimes in life we see and experience things that make us stop and demand that we take action. Below you will find a story about how transforming the tragedy of a profound and personal loss into motivation,
I am always touched and inspired by the courage shown by ALS patients
NPHVA respiratory therapist
As a respiratory therapist with the National Program for Home Ventilatory Assistance (NPHVA), I feel like I make a difference in the lives of ALS patients by giving them the gift of breathing easier.
Story by Lisa Dutton, Shout! Communications
Once a month, Marie-Eve Lemaire volunteers at the amyotrophic lateral sclerosis (ALS) clinic at L’Hôpital régional de Saint-Jérôme. She says talking with and helping those touched by ALS allows her to remember and honour her late husband Patrick Martin.
“Volunteering helps me mourn Patrick. Little
For as long as Michel is here, I will be by his side. Forever.
Our world is suddenly torn apart by my husband Michel’s diagnosis of ALS. We know the disease intimately—it robbed my husband’s mother of her life 24 years prior. Will I make it through this trial with
Working together to help as many people as possible
May 2012
For 10 years, I stood by my husband, who was diagnosed with the cruel degenerative neuromuscular disease amyotrophic lateral sclerosis. ALS causes muscle atrophy in the arms and legs. Eventually, the person can no longer walk, use his hands, feed
As long as there is a song…
I cherished the tought of being back on stage. However life decided otherwise.
On September 18, 2013, my amyotrophic lateral sclerosis diagnosis hit me like a tsunami.
The shock!
I was hit directly at the core. The feelings I had of sorrow, anger, fear,
Living life happily despite ALS
When I received my diagnosis that I have amyotrophic lateral sclerosis back in January 2014 it was obviously an incredible shock. After a difficult month in which I struggled to share the news with family and friends, I decided the live my life to the
“Life is beautiful”
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
I speak to many people, famous and not, about my experiences living with ALS, to raise public awareness
The Inspirational Robert Michaud
If you were to ask me to describe myself, I would answer that I am the father of four wonderful kids, Philippe, Marie-Pier, Ann-Liese and Claudine, the husband of
The older I got, the more I became my one and only BEST FRIEND
A few years ago ……..
The older I got, the more I became my one and only BEST FRIEND.
AND the nice thing about it was that …………. this friend almost always agreed with me!
I’ve
In a warrior’s heart there’s no surrender. Though his body yells stop! His spirit cries…NEVER!
I remember when I was first diagnosed with ALS, I was sure that it was a death sentence. I’ve never been more mistaken! Don’t get me wrong, it’s been hard losing my physical self-sufficiency and
Hello, my name is Alain Bérard. In July 2010, I began noticing certain symptoms, including a major decrease in energy. Despite being in peak physical condition (I ran the Ottawa marathon in May 2010), I felt more exhausted than usual. I had problems swallowing normally, and I noticed twitching in my
Living with ALS means learning to let go, to enjoy the present, and to appreciate the little things
Hello,
My name is Chantal Lanthier. I’m 47 years old, a wife, and the mother of an 18‑year‑old daughter. Until very recently, I worked for the federal government in a management position.
Building a team for a solid future A fraternity of friendship and support – Laughing, sharing and inspiring
When Alain Bérard walked up to the podium to give his acceptance speech and thanks for raising the most money for the ALS Walks last year, he never would have guessed that
Living a life to its potential — Inspired from a life taken too soon
Hello everyone!
My name is Ginette Beaudreault. I was born in Montreal, the fourth child of a family of five boys and two girls. None of my brothers and sisters have ever had any serious health
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
Two years ago, my husband, Dean, was diagnosed with amyotrophic lateral sclerosis (ALS), shocking news that devastated our family and turned our entire community upside down.
High school sweethearts, Dean and I had counted on having our whole life ahead of us, a life that we would live to
To lose the ability to communicate is like being invisible. What could be more important in life than being able to tell those close to us how much we love them?
Six months ago, when the law on medical assisted dying was passed, my husband chose the date on
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.
When you have ALS, hope is the main source of strength. Hope that researchers will find a treatment and hope that the care and support will help us get through this difficult journey.
I was 53 years old when I learned that I had Amyotrophic Lateral Sclerosis (ALS),
Let me tell you about my father, Luc Cousineau, a well-known Quebec singer song-writer.
He is best known for his 1976 hit “Vivre en Amour” (“Live with Love”), which was named a classic by the Society of Composers, Authors and Music Publishers of Canada and helped win him a
As part of the Caregivers’ Week, the Society wishes to shed light on the resilience and the extraordinary work done by caregivers for their loved ones. On May 13, 2007 Annie Huard was unaware that her life would be turned upside down as this marked the day that her
“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
Eliot H. Dunsky, MD, is a retired physician who since his diagnosis in 2009 has been living with ALS, the complex, progressively debilitating disorder commonly known as Lou Gehrig’s disease. Determined to maintain the best quality of life possible—for as long as possible—he extensively researched the condition and its management.Appropriate
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
The goal of this presentation will be to demystify what palliative care really is and what it is not. Another objective is to increase awareness and understand the nature of palliative care. In doing so people can have a better comprehension of the benefits involved not only for the patients
Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore
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
WEBINAR
On September 7th 2016, Me Danielle Chalifoux, President of l’Institut de Planification des Soins, provided our members with precious advice in order to help them better plan their medical care. If you didn’t get the chance to attend this conference (in french) from The Caregiver Network, a recording of
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
ALS, also known as Lou Gehrig’s disease, cannot be cured but it can be treated. A great deal can be done to treat the symptoms of ALS, to improve an individual’s quality of life, and to help families, caregivers, and loved ones to cope with the disease. This extensively revised
Practice Parameters from The American Academy of Neurology Report of the Quality Standards Subcommittee, whose objective is to systematically review evidence bearing on the management of patients with amyotrophic lateral sclerosis (ALS).
The care of the patient with ALS
Practice Parameters from The American Academy of Neurology Report of the Quality Standards Subcommittee, whose objective is to systematically review evidence bearing on the management of patients with amyotrophic lateral sclerosis (ALS).
The Care of the Patient with ALS
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
This guide was developed by the Health Charities Coalition of Canada to assist patients, caregivers, friends and families in understanding and navigating the Canadian healthcare system, and the actions you can take to help you receive the best possible health care. It should be noted that the information contained in
It was necessary to do more
Being a pharmacist for 33 years, my profession led me to get very involved in the community. Seeing that our government did not meet the growing demand for services and healthcare, I told myself that it was necessary to do more. A friend
My arms may be less powerful than when I proudly wore #22, but I’ll still feel the greeting of your hand on my shoulder if we meet some day.
I’m still the same.
Determined. Humble. Positive.
“It did us a world of good to laugh together. And to cry sometimes, too. Then our partners went, one after the other. But we girls still continued to see each other. The ice had been broken; we could tell each other anything. It was four years ago this week that my partner, Michel, left us. But these beautiful friendships help me keep his memory alive.”
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
Guy, an IT Specialist diagnosed three years ago with a form of ALS which affects one’s voice first, has never let the disease stop him from communicating with his network. But all that was being threatened. Guy’s disease had progressed, and his computer equipment was no longer adequate.
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
Patrick Turcot was filled with joy and excitement as he accepted Gilles Martel’s invitation to be the Honorary President of the 13th edition of the event.Mr Turcot, Master Chef at the Manoir Richelieu, had never been touched by ALS until he received an unexpected phone call from the Walk coordinator
On April 6, Isabelle Ducharme, the president of Kéroul, shared some helpful tips about accessible tourism. Whether the goal of your trip is relaxation, adventure or self-exploration, traveling is not only a possibility, it is a reality! Here are three ways you can travel the world without restrictions.
“The Chantal Lanthier Award is to be awarded to a volunteer whose remarkable contribution to our mission makes them an inspiration to others. Since her diagnosis, Chantal has advocated, heart and soul, for the rights of people living with ALS and their caregivers. This award was created to act as a perpetual reminder of her profound humanity, which has touched so many of us.”
It’s hard to believe that between working full-time, packing lunches, and going to hockey practices, a mother of four would add “VOLUNTEERING” in big letters to her calendar. Yet, Chantale Grenon-Nyenhuis continues to grab her brightest, boldest pen each month, and add the word which is so meaningful to her.
Between homework, exams, friends, and family, it may seem unimaginable for a 17 year old teenager to find time to volunteer. But for a cause that is close to her heart, Justine Martineau manages to do just that and in a remarkable way.
Ron Williams is among the few who prefer meeting face to face instead of communicating via email. In his leather-covered black briefcase, he safeguards pamphlets, articles, and promotional posters – all evidence of his many charitable achievements. He exudes pride and a profound consideration for the world around him.
Mylène Duchesneau knows the importance of giving time for a cause that is dear to her heart. As a professional graphic designer, she understands the value of donating her time and skills, much to the pleasure of the ALS Society.
When Sarah Saillant-Boulinguez is not busy managing hotels, she fills her time coordinating the Quebec City Walk for ALS. Here is the profile of a young woman eager to help, but most of all, to make people smile.
“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
“It’s the will to live, the will to continue that make our love more powerful than anything.”
« Être à ses côtés et voir son magnifique sourire quotidiennement, malgré la maladie, me comble au plus haut point. C’est ça l’amour inconditionnel pour moi et ce sera comme ça jusqu’à la fin».
The first ever practical, compassionate, and comprehensive guide to dying—and living fully until you do. This book is a clear-eyed and big-hearted action plan for approaching the end of life, written to help readers feel more in control of an experience that so often seems anything but controllable. The authors
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.
Nine years ago, Mrs. Shirley Reed lost her husband, Kenneth, to ALS on Christmas eve. This month, their foundation will double all donations to help families who are currently living what they went through years ago.
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
Quand manger devient plus compliqué… Bref exposé concernant les problèmes d’alimentation possibles en présence de SLA. De plus, certaines solutions pratiques seront abordées afin de simplifier l’alimentation et conserver le plaisir de manger.
Conférencières invitées: Geneviève Lapointe, nutritionniste et Nadia Bélanger, ergothérapeute du CHU de Québec (Hôpital de l’Enfant Jésus)
FOR IMMEDIATE RELEASE
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
*Mr Luc Cousineau passed away on March 6 2017, a little over 3 years after he received his ALS diagnosis.
“Tant qu’il y aura une chanson”
A figurehead of the Quebec music scene for the past fifty years, singer-songwriter Luc Cousineau has always had musical projects in mind. After the
As of April 24th, all persons diagnosed with ALS who are prescribed Rilutek® (brand-name) will be switched to the generic form riluzole as per a RAMQ mandate, even if the medical Doctor’s prescription mentions “Do Not Substitute”. In addition, renewed Rilutek® prescriptions already bearing the instruction “Do Not Substitute”
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
In 2004, Luc Vilandré’s big brother Pierre got the dire news that he had ALS. The 56-year old husband and father of three was a bon vivant. Luc says Pierre loved a good debate and fondly remembers a lot of feisty family gatherings with good food, good wine and good discussions.
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
“I feel compelled to comfort these patients and help them deal with the disease.”
Digging deep: finding strength
It was as if someone had punched him in the gut. Jocelyn Theoret was stunned by the news his 46-year-old wife Chantal Lanthier had Amyotrophic lateral sclerosis (ALS). “I was frozen, mute. My wife was asking the doctor questions but I was doubled over in
Sooner or later it will touch us all: A family member or loved one becomes ill or disabled, and we step in to help. This is caregiving, and in this powerful, unique book, prizewinning writer and advocate Beth Witrogen McLeod leads us through the caregiving journey with unflinching authority and
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
(French only) Les motoneurones situés dans la moelle épinière contrôlent les différents muscles de notre corps par l’intermédiaire de connections spécialisées appelées jonctions neuromusculaires. Celles-ci sont bien sur composées d’une terminaison nerveuse qui contacte et contrôle la fibre musculaire. Mais il y a aussi un autre type de cellule : les cellules gliales. Celles-ci sont essentielles pour la bonne marche des jonctions neuromusculaires et leur stabilité.
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
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
Grateful dad with ALS thanks those who took the Ice Bucket Challenge
Donations will help him cope as disease progresses
Dumping a bucket of ice water over your head gives you a shock! But that is nothing compared to the shock Yves Brisson received on August 20, 2012 when
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
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
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
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
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
I was 34 when I was first diagnosed with ALS 10 years ago, I was sure that it was a death sentence and my life, as I knew it was over. It’s been hard losing my physical self to the disease. It’s like a fresh flower losing its petals,
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
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
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
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
It is safe to say Dr. Nicolas Dupré knows a thing or two about genetics. The focus of Dr. Dupré’s research is the search for genes associated with neurodegenerative diseases such as ALS. So, he is pretty confident when he jokingly predicts his daughter Emma, 8, has the ‘health care
Despite living in a province that is mad for hockey, Mrs. Genevieve Bertrand much prefers to hear the crack of the bat and the phrase ‘up, up and away’ than the slap of a stick and the phrase ‘he shots, he scores’. Mrs. Bertrand is a huge baseball fan
“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
Psychiatrist Leslie Anderson, who lost her brother Craig to ALS, has spent the past twenty years studying meditation in India. During Craig’s illness she practiced meditation with him regularly – sometimes in person, sometimes over Skype from the Himalayas. Craig found Leslie’s guided meditations helped him to relax and access
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
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
They live in different regions of the province and hail from different walks of life. Men and women. Young and not-so-young. The five volunteers you are about to meet have one thing in common: all have a passion for helping the ALS Society of Quebec and a deep love
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
Invited speaker: Dr. Michael J. Strong, MD, FRPC(C), FAAN, FCAHS, Western University, London, Ontario.
Dr. Michael Strong is Dean of the Schulich School of Medicine & Dentistry, a Distinguished University Professor at Western University, and the Arthur J. Hudson Chair in ALS Research. He graduated from Queens University in Kingston in
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,
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
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
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
David Hazan is a Chartered Accountant certified in both Quebec and Ontario with 40 years of experience in the preparation of personal income tax returns. When presented with the tax returns of disabled individuals over the years, David noticed that individuals and their supporting relatives often did not take full advantage of the many federal
The death of a loved one is a difficult time, during which a number of pressing administrative tasks must be accomplished. The What to Do in the Event of Death guide provides an overview of the main obligations you have to fulfill and the applicable deadlines.
Published by Services Québec,
NEW! Read our Zoom user guides.
Since March 2020, many social activies for the ALS community are being held online on Zoom. In order to help you using the Zoom app, we created user guides based on the different communication support you’re using.
Choose the option that corresponds to your
An inspiring guide to help you through the mourning process. Mourning the death of a loved one is a process all of us will go through at one time or another. But wherever the death is sudden or anticipated, few of us are prepared for it or for the grief
Tips, activities, and videos to help you and your child deal with difficult feelings. Video Segments featuring Katie Couric, Elmo, and the courageous stories of families coping with the death of a parent. Elmo and Jessie sometimes have big feelings when they remember Uncle Jack, but Elmo’s dad Louie reminds
Dementia and Motor Neuron Disease is a single authoritative reference on the current understanding of frontotemporal dementia in amyotrophic lateral sclerosis (ALS). This comprehensive work is ideal for clinical and research groups focusing on dementia or ALS, as well as those working in the fields of neuroimaging and
“Amyotrophic Lateral Sclerosis By Dr. Robert G. Miller, Dr. Deborah Gelinas, and Patty O’Connor, RN”
AMYOTROPHIC LATERAL SCLEROSIS
