Families touched by ALS, volunteers, researchers, healthcare professionals or participants in our fundraising events, be as inspired as we are by these stories from different members of the ALS community. Thank you to our ambassadors and to all the families who continue to share their stories with us and the media in order to keep the conversation going. 

Illusion

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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

At a loss for words

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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

Chantal Lanthier’s column

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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

Dr Michael Strong’s Story

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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

Dr Heather Durham’s Story

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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

Dr Nicolas Dupré’s Story

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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

Stéphanie Plamondon’s Story

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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

Philippe Michaud’s Story

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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

Daniel Malandruccolo’s Story

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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

Guylaine Breault’s Story

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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

Caroline Chartier’s Story

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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

Luc Vilandré Story

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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

Dominic Delambre’s Story

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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

Suzy Luck’s Story

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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

Richard Robineault’s Story

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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

Rhoda Madoff’s Story

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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

Michel Richoz’s Story

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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

Lorraine Delambre’s Story

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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

Gilles Martel’s Story

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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

Éric Paradis’ Story

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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

Diane Maltais’ Story

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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

Daniel Berthiaume’s Story

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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

Diane Tkalec’s Story

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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,

Karine Mathieu’s Story

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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.

Marie-Ève Lemaire’s Story

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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

Nathalie Provost’s Story

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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

Odette Lacroix’s Story

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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

Luc Cousineau’s Story

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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,

Daniel Taillefer’s Story

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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

Maurice Leclerc’s Story

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“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

Robert Michaud’s Story

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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

Maurice Leclerc’s Story

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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

Carlos Botehlo’s Story

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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

Alain Berard’s Story

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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

Chantal Lanthier’s Story

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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.

Chum de la SLA

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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

Ginette Beaudreault’s Story

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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

Paula Stock- It’s the time to join forces

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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

Guy Provost- It’s the time to share!

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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

Test Maurice Leclerc’s Story

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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.

Michel Tremblay-It’s the time to hope!

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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),

It’s the time to love-Karine Cousineau

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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

Seasons of life – Annie Huard’s testimony as a caregiver

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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

Pierre Madore: “We must act”

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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

I’m still the same – Michael Soles

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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.

The ice had been broken. We could tell each other anything…

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“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.”

“My eyes filled with tears, and so did Guy’s.”

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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.

Patrick Turcot, Honorary President of the Walk in Charlevoix

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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

The Chantal Lanthier Award

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“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.”

Chantale Grenon-Nyenhuis

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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.

Justine Martineau

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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

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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

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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.

Sarah Saillant-Boulinguez

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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.

Our love is more powerful than anything – Alain and Dominique

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“It’s the will to live, the will to continue that make our love more powerful than anything.”

Valentine’s Day Every Day – Chantal and Jocelyn

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« 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».

Gift Matching Christmas Campaign!

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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.

New album by Luc Cousineau

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*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

Luc Vilandré: Getting involved to make a difference

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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.

Dr Nicolas Dupré’s Story

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“I feel compelled to comfort these patients and help them deal with the disease.”

Jocelyn’s Story

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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

Yves Brisson, living with ALS for two years, thanks you

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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

10 years with ALS: Carlos’ Story

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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,

Geneviève Bertrand hits a homerun for ALS

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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

Empathy is part of the Dupré family genetic make-up

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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

Dedicated Volunteers Step-Up

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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