Our Programs and Services for People with ALS, Caregivers and Healthcare Professionals

The Amyotrophic Lateral Sclerosis Society of Quebec is dedicated to improving the lives of people living with ALS and supporting their caregivers. Through our close collaboration with healthcare partners, we are able to offer a variety of programs and services that are complementary to those offered by other organizations.

The needs of people living with ALS and their caregivers change during all stages of the disease, which is why the ALS Society of Quebec offers many different services. Through documentation, conferences, newsletters and a website, people with ALS, caregivers and healthcare professionals can learn more about issues with regard to ALS. A team of dedicated psychosocial counselors offers support to each member of the Society: through orientation meetings, support groups, phone support meetings and a toll-free support line. Social and networking activities help reduce social isolation felt by many.

Please note that in order to have access to our services, you need to be registered as a member.

To register

Please select the registration form that corresponds best to your profile:

Information on ALS

Conferences

In 2015, 15 conferences and 9 regional phone meetings have been held. Topics generally include research, nutrition, caregivers and many more! Be sure to subscribe to our Calendar newsletter to be the first to know about our upcoming conferences.

Documentation

Manual for people living with ALS: The seventh edition of the Manual For People Living with ALS is a useful tool filled with practical advice. Readers will find helpful tips on how to take charge of their health, manage ALS care and cope with the progression of the disease which in some cases can be rapid.

Fact sheets

Source: ALS Society of Canada

10 Facts About ALS  ALS Fact Sheet ALS, First Steps
Bulbar ALS ALS, MS and MD 10 Facts about Pain and ALS
When Speaking About ALS ALS Ways to Help Primary Lateral Sclerosis (PLS)
Clinical Trials Caregiver Stress Assisting Families Living with ALS
Reducing Stress Coping with Grief Compassion Fatigue
Spinal Muscular Atrophy Ventilation: Options and Decision Making Kennedy’s Disease
The Dangers of Unproven Therapies Natural Health Products Alternative Treatments
Natural Health Products—Understanding Complementary or Alternative Medicine Complementary Therapies Sexuality, Intimacy and Chronic Illness
ALS and Cognitive Changes Genetic Testing for ALS

Resources for Youth

The following booklets are available to help teens and children whose life is affected by the disease of a loved one.

Information on bereavement

Coping with Grief

This resource will help you understand the grieving process and assist you in your own experience with loss.

Information for Physicians

Guide to ALS Patient Care for Primary Care Physicians

To ensure that ALS patients receive the highest quality care, it is important for primary care physicians to be well informed about the disease, and to work with a team of specialists for their patient’s care.

This guide will help physicians:

  • recognize the signs and symptoms of ALS
  • understand ALS progression, symptom management, changing patient needs, and the importance of interdisciplinary ALS care
  • help patients and caregivers cope with this very complex and progressive neuromuscular disease

Newsletters

We send out two types of newsletters to keep you informed about our upcoming events and news from the ALS community.

InfoXpress: Monthly Events Calendar

Be among the first to know about our upcoming events! The InfoXpress is sent once a month and lists all our upcoming activities for our members, such as support groups, social activities, conferences and fundraisers.

Centaurea: Quarterly bulletin

The Centaurea is our quarterly newsletter and features inspiring stories of people touched by ALS, as well as researchers profiles, research news, our major fundraising events and different ways you can get involved for the cause!

Psychosocial Support

Orientation and reference

The ALS Society of Quebec offers its members personalized psychosocial support. Our team of four psychosocial counselors are dedicated to helping you and your loved ones during all stages of the disease.

Toll-free line

Contact us at 514 725-2653 (or toll-free in Quebec 1 877 725-7725) to speak to a psychosocial counselor or schedule an appointment. Our team of counselors can answer your questions and concerns, as well as those of your family.

Support groups

We organize monthly social and support activities such as outings, support groups, and conferences. These informal and friendly events are perfect to meet and exchange with people going through a situation similar to yours. Visit our Events Calendar to browse our upcoming events.

Teleconferences

In order to reach as many people throughout the province as possible, we offer many phone conferences.

Here are some upcoming events that may interest you:

May
1
Mon
Support Group by NOVA West Island
May 1 @ 18:00 – 20:00
Support Group by NOVA West Island @ Beaconsfield | Québec | Canada

ALS caregiver support Group

In partnership with Nova West Island and with the generous support of the Tony Proudfoot Fund, monthly meetings are organized with fellow ALS caregivers to discuss some of the challenges each are facing. Although each person engages according to their comfort level, caregivers are encouraged to participate by sharing their personal experiences with others who are in a similar situation.

When: The 1st Monday of every month from 6-8 pm

Where: 447 Beaconsfield Blvd. Beaconsfield, H9W 4C2

Nova West Island will provide free of charge:

  • Two experienced home care nurses to facilitate the group
  • Health Care Aides, for home support, [in our catchment area] to facilitate the caregivers attendance at the meetings

Possible topics and guest speakers:

  • Home adaptation
  • Community resources
  • Insurance coverage
  • Compassionate Benefits
  • Spiritual guidance
  • Social worker/Family Therapist
  • Children Support

For more information or to register, please contact Viviane Schami at 514-695-8335, ext. 209 or e-mail vschami@novawi.org

May
2
Tue
Support group – Montreal @ ALS Society of Quebec
May 2 @ 13:30 – 15:30
Support group - Montreal @ ALS Society of Quebec  | Mont-Royal | Québec | Canada

Have you been touched by amyotrophic lateral sclerosis?  Would you like to share and exchange with others who understand your experience with ALS?

Two groups are offered simultaneously: one for the people with ALS and one for caregivers. The purpose of this dedicated time and space is to share your experiences, discuss your concerns and exchange information and resources with others. Our psychosocial counselors are bilingual are available to translate as required.

  • Free parking, accessible for people with reduced mobility
  • Possibility of reimbursement for travel and respite expenses to facilitate participation
  • Drink and snack included

Possibility of cancellation if 3 or fewer people register

May
3
Wed
Québec– Coffee gathering to discuss palliative care @ Caisse Desjardins du personnel municipale de Québec
May 3 @ 13:00 – 16:00
Québec– Coffee gathering to discuss palliative care @ Caisse Desjardins du personnel municipale de Québec | Ville de Québec | Québec | Canada

This presentation in French is intended to demystify palliative care, as well as, to discuss the services that are available and what it means  to accompany someone during this stage. The goal is to alleviate anticipatory anxiety for everyone involved by answering questions that can dispel the myths surrounding palliative care. People with ALS, caregivers, parents, offspring’s, brothers, sisters and friends are welcome.

Guest speaker: Dr. Chantale Morency, palliative care physician at the Centre hospitalier universitaire de Québec/Hôpital l’Enfant-Jésus and instigator of the ALS patients palliative care program
Time:
1 :00pm to 4 :00pm
Location: Caisse Desjardins du personnel municipale de Québec, 600 boul. Pierre-Bertrand, coin Samson, Québec, G1M 3W5
Registration: Odette Lacroix lacmich@oricom.ca or via phone at  418 626-8726 / 418 655-8726

May
10
Wed
Conference and webinar: Accessible Tourism for Everyone @ Société de la SLA du Québec
May 10 @ 13:30 – 15:00
Conference and webinar: Accessible Tourism for Everyone @ Société de la SLA du Québec | Mont-Royal | Québec | Canada

Planning and preparing for a trip is a good opportunity to break away from the daily routine which can be at times burdensome. Isabelle Ducharme, President of the board of directors at Kéroul, will be presenting a conference on adapted travel for people with reduced mobility. Please note that this conference will also be offered via webinar.

Guest speaker: Isabelle Ducharme, President of the Board of Directors, Kéroul.
Date and time: Wednesday, May 10 from 1:30pm to 3:00pm
Location: Offices of the ALS Society of Quebec

To attend in-person: contact Elizabeth at 514 725-2653, ext: 103 or ebarbosa@sla-quebec.ca
To attend via webinar: by email at info@lratcn.ca or via The Caregiver Network’s website.

May
13
Sat
Closed group for caregivers @ ALS Society of Quebec
May 13 @ 13:00 – 15:00
Closed group for caregivers @ ALS Society of Quebec | Mont-Royal | Québec | Canada

Are you caring for someone living with amyotrophic lateral sclerosis?

We’re inviting you to take part in a series of four workshops called “Coup de pouce, coup de coeur”.  Taking care of someone with ALS is not an easy endeavor and this is why we would like offer you the time and the space to reflect and exchange within a closed support group setting comprised of 4 sessions, which aim to help you preserve both physical and psychological health, as well as the precious relationship you have with your loved one. The workshops are in French and will be animated by Elaine Clavet who is a social worker and psychotherapist.

What is a closed group? The closed group is for people who are willing to take part in all 4 workshops. A maximum of 10 to 12 people can register.

  • Free parking;
  • Possibility of reimbursing travel expenses and respite fees incurred by taking part in the activity ;
  • Snacks and beverages are included.

Dates/time: Saturdays, May 13 and 27 / June 10 and 17 from 1:00pm to 3:00pm
Location:
The ALS Society of Quebec office, 5415 Paré street, suite 200, Mount-Royal, QC H4P
Registration: Leigh Stephens at 514 725-2653, ext. 112 or caregiver@sla-quebec.ca

Social activities and networking events

We organize three types of social activities and networking events.

  • Support and education events
  • Social activities
  • Fundraising activities

Here are our upcoming events

May
1
Mon
Support Group by NOVA West Island
May 1 @ 18:00 – 20:00
Support Group by NOVA West Island @ Beaconsfield | Québec | Canada

ALS caregiver support Group

In partnership with Nova West Island and with the generous support of the Tony Proudfoot Fund, monthly meetings are organized with fellow ALS caregivers to discuss some of the challenges each are facing. Although each person engages according to their comfort level, caregivers are encouraged to participate by sharing their personal experiences with others who are in a similar situation.

When: The 1st Monday of every month from 6-8 pm

Where: 447 Beaconsfield Blvd. Beaconsfield, H9W 4C2

Nova West Island will provide free of charge:

  • Two experienced home care nurses to facilitate the group
  • Health Care Aides, for home support, [in our catchment area] to facilitate the caregivers attendance at the meetings

Possible topics and guest speakers:

  • Home adaptation
  • Community resources
  • Insurance coverage
  • Compassionate Benefits
  • Spiritual guidance
  • Social worker/Family Therapist
  • Children Support

For more information or to register, please contact Viviane Schami at 514-695-8335, ext. 209 or e-mail vschami@novawi.org

May
2
Tue
Support group – Montreal @ ALS Society of Quebec
May 2 @ 13:30 – 15:30
Support group - Montreal @ ALS Society of Quebec  | Mont-Royal | Québec | Canada

Have you been touched by amyotrophic lateral sclerosis?  Would you like to share and exchange with others who understand your experience with ALS?

Two groups are offered simultaneously: one for the people with ALS and one for caregivers. The purpose of this dedicated time and space is to share your experiences, discuss your concerns and exchange information and resources with others. Our psychosocial counselors are bilingual are available to translate as required.

  • Free parking, accessible for people with reduced mobility
  • Possibility of reimbursement for travel and respite expenses to facilitate participation
  • Drink and snack included

Possibility of cancellation if 3 or fewer people register

May
3
Wed
Québec– Coffee gathering to discuss palliative care @ Caisse Desjardins du personnel municipale de Québec
May 3 @ 13:00 – 16:00
Québec– Coffee gathering to discuss palliative care @ Caisse Desjardins du personnel municipale de Québec | Ville de Québec | Québec | Canada

This presentation in French is intended to demystify palliative care, as well as, to discuss the services that are available and what it means  to accompany someone during this stage. The goal is to alleviate anticipatory anxiety for everyone involved by answering questions that can dispel the myths surrounding palliative care. People with ALS, caregivers, parents, offspring’s, brothers, sisters and friends are welcome.

Guest speaker: Dr. Chantale Morency, palliative care physician at the Centre hospitalier universitaire de Québec/Hôpital l’Enfant-Jésus and instigator of the ALS patients palliative care program
Time:
1 :00pm to 4 :00pm
Location: Caisse Desjardins du personnel municipale de Québec, 600 boul. Pierre-Bertrand, coin Samson, Québec, G1M 3W5
Registration: Odette Lacroix lacmich@oricom.ca or via phone at  418 626-8726 / 418 655-8726

May
6
Sat
Walk for ALS – Saint-Hyacinthe @ Promenade Gérard Côté, Saint-Hyacinthe
May 6 @ 09:00

Location: Promenade Gérard-Côté, Saint-Hyacinthe. Meeting point: Downtown Saint-Hyacinthe, parking behind the Fédération des Caisses populaires Desjardins (entrance on Bourdages street)
Registration:
8:30am
Walk/run start: 9:00am
Walk/run end: 9:50am
Cost: Free or donation proportional to the number of km
To register for the Walk/run: visit the Centre ADN’s Facebook page
To make a donation or raise funds for the Walk/run: visit Saint-Hyacinthe’s Walk Fundraising page

Thank you to Denise St-Pierre and her organizing committee for their continuous efforts!       

The Centre ADN is proud to dedicate a training morning to the ALS Society of Quebec. For this occasion you will have the opportunity to join us for the 3rd edition of the Walk/Run for ALS in Saint-Hyacinthe!

Federal MP Brigitte Sansoucy, Honorary Spokesperson of Saint-Hyacinthe’s 3rd Walk for ALS

On March 23, Federal MP Brigitte Sansoucy spoke in the House of Commons on behalf of the ALS community. Ms. Sansoucy raised awareness brigitte-sansoucyamong her colleagues in the political field about the importance of investing in ALS research and supporting the mission of all Canadian ALS Societies. Truly touched by this cause, it is with great pleasure that the Bagot-Saint-Hyacinthe MP accepts the role of Honorary Spokesperson for this year’s Walk for ALS in Saint-Hyacinthe. “I look forward to seeing many of my fellow citizens at this mobilizing event,” said Ms Sansoucy.

Thank you to our proud sponsors!

                  logo_m-v_504x504-copie

May
10
Wed
Conference and webinar: Accessible Tourism for Everyone @ Société de la SLA du Québec
May 10 @ 13:30 – 15:00
Conference and webinar: Accessible Tourism for Everyone @ Société de la SLA du Québec | Mont-Royal | Québec | Canada

Planning and preparing for a trip is a good opportunity to break away from the daily routine which can be at times burdensome. Isabelle Ducharme, President of the board of directors at Kéroul, will be presenting a conference on adapted travel for people with reduced mobility. Please note that this conference will also be offered via webinar.

Guest speaker: Isabelle Ducharme, President of the Board of Directors, Kéroul.
Date and time: Wednesday, May 10 from 1:30pm to 3:00pm
Location: Offices of the ALS Society of Quebec

To attend in-person: contact Elizabeth at 514 725-2653, ext: 103 or ebarbosa@sla-quebec.ca
To attend via webinar: by email at info@lratcn.ca or via The Caregiver Network’s website.

May
13
Sat
Closed group for caregivers @ ALS Society of Quebec
May 13 @ 13:00 – 15:00
Closed group for caregivers @ ALS Society of Quebec | Mont-Royal | Québec | Canada

Are you caring for someone living with amyotrophic lateral sclerosis?

We’re inviting you to take part in a series of four workshops called “Coup de pouce, coup de coeur”.  Taking care of someone with ALS is not an easy endeavor and this is why we would like offer you the time and the space to reflect and exchange within a closed support group setting comprised of 4 sessions, which aim to help you preserve both physical and psychological health, as well as the precious relationship you have with your loved one. The workshops are in French and will be animated by Elaine Clavet who is a social worker and psychotherapist.

What is a closed group? The closed group is for people who are willing to take part in all 4 workshops. A maximum of 10 to 12 people can register.

  • Free parking;
  • Possibility of reimbursing travel expenses and respite fees incurred by taking part in the activity ;
  • Snacks and beverages are included.

Dates/time: Saturdays, May 13 and 27 / June 10 and 17 from 1:00pm to 3:00pm
Location:
The ALS Society of Quebec office, 5415 Paré street, suite 200, Mount-Royal, QC H4P
Registration: Leigh Stephens at 514 725-2653, ext. 112 or caregiver@sla-quebec.ca

May
16
Tue
Regional conference on ALS: Saint-Jérôme @ Hôpital régional de Saint-Jérôme
May 16 @ 13:00 – 16:45
Regional conference on ALS: Saint-Jérôme @ Hôpital régional de Saint-Jérôme  | Saint-Jérôme | Québec | Canada

Learn more about ALS

A general presentation on ALS will be given by Dr. Marie-Josée Langlois, neurologist at the CISSS des Laurentides, for those touched by ALS and healthcare professionals followed by a Q&A period and a support group for families.

Guest speaker: Dr. Marie-Josée Langlois
Date and time : 
Tuesday May 16, 1 :30pm to 4 :45pm
Location: Hôpital régional de Saint-Jérôme (in the auditorium Pavillion Jeanne-Mance- Bloc E), 290 rue de Montigny à Saint-Jérôme

Schedule: 

1:30pm        Presentation of services offered by the ALS Society of Quebec

2:00pm       Learn more about ALS with Dr. Marie-Josée Langlois, neurologist

3:15pm        Q&A session

3:30pm        Coffee break

3:45pm        Support group for people living with ALS and their loved ones

4:45pm        Closing


Support Group – Quebec City @ Centre Noël-Brulart, rooms #212 and #104
May 16 @ 13:30 – 15:30
Support Group - Quebec City @ Centre Noël-Brulart, rooms #212 and #104 | Québec | Québec | Canada

Two support groups take place simultaneously in the Quebec City region: the first group is intended for caregivers and the second group is for people with ALS. (Free parking)

Date and time: Tuesdays, from 1:30pm to 3:30pm. Please click here to see the upcoming support groups. 
Location: Centre Noël-Brulart (1229, Chanoine-Morel, Quebec, G1S 4B1)
Room 212 for caregivers and Room 104 for people with ALS
Registration: Odette Lacroix  418-626-8726 or 418-655-8726

May
18
Thu
Support group – Laurentides @ Centre Culturel Louis St-Laurent
May 18 @ 10:00 – 12:00
Support group - Laurentides @ Centre Culturel Louis St-Laurent | Lorraine | Québec | Canada

You are invited to join one of our open support groups: there will be one for people with ALS and another for caregivers. Coffee, juice and snacks will be offered. You may bring a cold lunch.

May
22
Mon
Yoga pour la SLA @ Centre ADN
May 22 @ 19:30 – 20:30

The Centre ADN is honored to train again this year for the ALS Society of Quebec. You are invited to an outdoor yoga session, led by Anne and Karolann. The evening promises to be magical on a site infused with nature and tranquility. The activity will take place on Monday 22nd from 7:30 pm to 8:30 pm at Centre ADN.

You are invited to donate to the ALS Society of Quebec (suggestion $15, price of a special course)

Visit the event’s Facebook page for more details

Thank you to Centre ADN and Denise St-Pierre for her devotion and continuous efforts towards a future without ALS.

Organized by

centre_adn_logo_pastilles_aout16-01-2

Technical Aid And Financial Assistance

The ALS Society of Quebec facilitates the rental of equipment that helps improve the quality of life for people with ALS but that is not provided free of charge under the provincial healthcare system. In cases of urgent need, the Society can defray purchasing or rental costs for certain equipment that the patient requires immediately, but that the concerned institution cannot immediately provide.  The Society also has programs related to minor home adaptations and financial contributions towards services not normally covered by any governmental program.  Please note that any request for financial aid must come from a health professional.

To find out more about the programs, please contact us.

Financial contribution for respite

Caring for the caregiver: Respite Care Pilot Program aims to support families of people living with ALS

RespiteIn December 2014, the ALS Society of Quebec conducted a CROP survey with its members—people living with ALS, their caregivers and healthcare providers—to get feedback on the Society’s services and determine their most pressing needs. One of the main findings of the survey was the need for respite care. Feedback from the survey showed that not only is respite care a vital issue, but that it means different things to different people. ALS is a complex disease and family members can have very different needs at various stages. Our new respite care program is designed to support families in meaningful ways that will complement the services already available to them.

The Respite Care Program is being launched thanks to the hugely successful Ice Bucket Challenge (IBC) in 2014, which coincides with ALS Society of Quebec board member, Chantal Lanthier`s proposal for such a program, shortly before the IBC made headlines.

How the program works

Families must request respite care services through their CLSC (social worker or occupational therapist); a form to request reimbursement will be made available to members. Any questions about the program may be sent to Kate Busch at the ALS Society of Quebec

Initially, the Respite Care Program will take the form of a six-month pilot project. Members of the ALS Society of Quebec will be eligible to receive up to $1,500 annually, to reimburse expenses for respite care, in order for those caring for someone with ALS to find additional support or the opportunity to take a break from their ongoing responsibilities. Diane Tkalec, ALS Society of Quebec board member and Respite Care Program committee member explains that the idea is to help maintain health and wellness by reducing stress. Not only will funds be provided, but families will be able to choose the services that suit their specific needs. Examples include getting help from local homecare providers for days, nights or weekends or spending time at an adapted care facility.

odette

Odette Lacroix: winner of the 2016 Chantal Lanthier Award

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 moment Odette’s husband, Pierre Lacroix, […]

roulez

Dominic Delambre, Luc Vilandré and Michel Simard : behind the Ride to Fight ALS’s success

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 propel this cycling challenge forward. […]

gilles-martel

Gilles Martel: moving forward, one walk at a time

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 years. Everything in Ghislain’s personal […]

May 1 @ 18:00 – 20:00
ALS caregiver support Group In partnership with Nova West Island and with the generous support of the Tony Proudfoot Fund, monthly meetings are organized with fellow ALS caregivers to discuss some of the challenges each[...]
May 2 @ 13:30 – 15:30 ALS Society of Quebec
Have you been touched by amyotrophic lateral sclerosis?  Would you like to share and exchange with others who understand your experience with ALS? Two groups are offered simultaneously: one for the people with ALS and[...]
May 3 @ 13:00 – 16:00 Caisse Desjardins du personnel municipale de Québec
This presentation in French is intended to demystify palliative care, as well as, to discuss the services that are available and what it means  to accompany someone during this stage. The goal is to alleviate[...]
May 6 @ 09:00 Promenade Gérard Côté, Saint-Hyacinthe
Location: Promenade Gérard-Côté, Saint-Hyacinthe. Meeting point: Downtown Saint-Hyacinthe, parking behind the Fédération des Caisses populaires Desjardins (entrance on Bourdages street) Registration: 8:30am Walk/run start: 9:00am Walk/run end: 9:50am Cost: Free or donation proportional to the number of[...]