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:

Jun
28
Wed
Adapted sailing @ Club de yacht Pointe Claire
Jun 28 @ 11:00 – 16:00
Adapted sailing @  Club de yacht Pointe Claire | Pointe-Claire | Québec | Canada

Experience Adapted Sailing

“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…” – Ginette Beaudreau, during the Summer 2015 Adapted Sailing Outing

On Wednesday June 28th, join us for a memorable experience of adapted sailing at the Pointe-Claire Yacht Club.

Because of limited availability,  this activity is reserved for members with ALS. Furthermore, each participant must be accompanied by their caregiver. However, caregivers will not be able to board the sailboat. During the 90-minute expedition, each member will be paired with a licensed sailor.

Please bring:

  • Snacks;
  • a water bottle;
  • sunscreen;
  • an optional change of clothes.

Limited places – please RSVP before June 21st.

Jun
29
Thu
Phone meeting
Jun 29 @ 13:30 – 15:30
Phone meeting

We are happy to announce regional phone meetings for people with ALS, caregivers and healthcare professionals. Meet other people touched by ALS in your region. Discuss, share your feelings and concerns and talk about your journey in a safe environment.

Mauricie & Centre-du-Québec

When: Thursday June 29th

Registration:  Elizabeth at ebarbosa@sla-quebec.ca or 1 877 725-7725 ext. 103

For more more information please contact our psychosocial counselor Yves Lafleur by email ylafleur@sla-quebec.ca or telephone at 1 877 725-7725 ext: 107

Jul
11
Tue
Support Group – Monteregie @ Centre Montérégien de Réadaptation
Jul 11 @ 13:00 – 15:00

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

Rooms: Longueuil for caregivers and Montérégie for people with ALS

* Possibility of cancellation if 3 or fewer people register

Logo_Appui

Aug
10
Thu
Adapted sailing @ Club de yacht Pointe Claire
Aug 10 @ 11:00 – 16:00
Adapted sailing @  Club de yacht Pointe Claire | Pointe-Claire | Québec | Canada

Experience Adapted Sailing

“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…” – Ginette Beaudreau, during the Summer 2015 Adapted Sailing Outing

On Wednesday June 28th, join us for a memorable experience of adapted sailing at the Pointe-Claire Yacht Club.

Because of limited availability,  this activity is reserved for members with ALS. Furthermore, each participant must be accompanied by their caregiver. However, caregivers will not be able to board the sailboat. During the 90-minute expedition, each member will be paired with a licensed sailor.

Please bring:

  • Snacks;
  • a water bottle;
  • sunscreen;
  • an optional change of clothes.

Limited places – please RSVP before June 21st.

Sep
5
Tue
Support Group – Monteregie @ Centre Montérégien de Réadaptation
Sep 5 @ 13:00 – 15:00

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

Rooms: Longueuil for caregivers and Montérégie for people with ALS

* Possibility of cancellation if 3 or fewer people register

Logo_Appui

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

Jun
28
Wed
Adapted sailing @ Club de yacht Pointe Claire
Jun 28 @ 11:00 – 16:00
Adapted sailing @  Club de yacht Pointe Claire | Pointe-Claire | Québec | Canada

Experience Adapted Sailing

“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…” – Ginette Beaudreau, during the Summer 2015 Adapted Sailing Outing

On Wednesday June 28th, join us for a memorable experience of adapted sailing at the Pointe-Claire Yacht Club.

Because of limited availability,  this activity is reserved for members with ALS. Furthermore, each participant must be accompanied by their caregiver. However, caregivers will not be able to board the sailboat. During the 90-minute expedition, each member will be paired with a licensed sailor.

Please bring:

  • Snacks;
  • a water bottle;
  • sunscreen;
  • an optional change of clothes.

Limited places – please RSVP before June 21st.

Jun
29
Thu
Phone meeting
Jun 29 @ 13:30 – 15:30
Phone meeting

We are happy to announce regional phone meetings for people with ALS, caregivers and healthcare professionals. Meet other people touched by ALS in your region. Discuss, share your feelings and concerns and talk about your journey in a safe environment.

Mauricie & Centre-du-Québec

When: Thursday June 29th

Registration:  Elizabeth at ebarbosa@sla-quebec.ca or 1 877 725-7725 ext. 103

For more more information please contact our psychosocial counselor Yves Lafleur by email ylafleur@sla-quebec.ca or telephone at 1 877 725-7725 ext: 107

Jul
8
Sat
Festival Saint-Lazare au Galop
Jul 8 @ 11:00 – Jul 9 @ 10:30
Festival Saint-Lazare au Galop @ Saint-Lazare | Québec | Canada

The Festival Saint-Lazare au Galop is back! The 2017 edition will take place on July 8 and 9, 2017.

For the event, the city center will be transformed to accommodate thousands of citizens, visitors and tourists for two days of horse-riding celebrations. The 3rd edition of the Festival provides a multitude of varied activities for all in an equine atmosphere faithful to the unique characteristic of the city. This year, PJ Stock, a former NHL player, will be the honorary president of the event.

The Festival Saint-Lazare au Galop is a non-profit equestrian event for the whole family.  It was born in 2015 and drew nearly 10,000 people over three days, successfully become one of Québec’s top horse-based tourist attractions.

Philanthropy is the core of the Festival. A portion of the donations received will be donated to the ALS Society of Quebec to honor Dean Stock, the brother of PJ Stock, who passed away from ALS in December 2016.

Don’t miss out this great opportunity to have fun with friends and family!

For more details, visit the event’s website.

Jul
11
Tue
Support Group – Monteregie @ Centre Montérégien de Réadaptation
Jul 11 @ 13:00 – 15:00

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

Rooms: Longueuil for caregivers and Montérégie for people with ALS

* Possibility of cancellation if 3 or fewer people register

Logo_Appui

Aug
10
Thu
Adapted sailing @ Club de yacht Pointe Claire
Aug 10 @ 11:00 – 16:00
Adapted sailing @  Club de yacht Pointe Claire | Pointe-Claire | Québec | Canada

Experience Adapted Sailing

“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…” – Ginette Beaudreau, during the Summer 2015 Adapted Sailing Outing

On Wednesday June 28th, join us for a memorable experience of adapted sailing at the Pointe-Claire Yacht Club.

Because of limited availability,  this activity is reserved for members with ALS. Furthermore, each participant must be accompanied by their caregiver. However, caregivers will not be able to board the sailboat. During the 90-minute expedition, each member will be paired with a licensed sailor.

Please bring:

  • Snacks;
  • a water bottle;
  • sunscreen;
  • an optional change of clothes.

Limited places – please RSVP before June 21st.

Aug
20
Sun
Walk for ALS – Laval @ Des Prairies Park
Aug 20 @ 11:00

Registration: 9:30 AM
Walk start: 11:00 AM
Length of walk: 2.5 km
Entrance fee:  $10

Save the date for the Walk in Laval. For the second year in a row, the Walk for ALS is part of the race event LA VALSE DES COUREURS. All profits of the 2.5km walk will benefit the ALS Society of Quebec. The event promises emotional and inspiring encounters! Join us for a festive afternoon and help raise funds for ALS.

Runners, this event has earned The GOLD label sanction has been awarded by the Fédération québécoise d’athlétisme. The event also offers 10 km, 5 km, 2 km (20 years and over), 2 km (12-19th years) and 1km (11 years and under). All participants are invited to raise funds for the ALS Society of Quebec.

Thanks to Lyne Carry and LA VALSE DES COUREURS’s team for their continuous efforts.

Thanks to our proud sponsor!

logo-valse-des-coureurs

Aug
25
Fri
Ride to fight ALS 3-DAY CHALLENGE @ Château Vaudreuil,
Aug 25 all-day
Ride to fight ALS 3-DAY CHALLENGE @ Château Vaudreuil, | Vaudreuil-Dorion | Québec | Canada

Looking for a real challenge? Get your bike and come ride a total of 300km over three days in the picturesque road of Vaudreuil-Dorion.  With adapted routes for each cyclist level, the ride holds something for everyone.

Lodging at Château Vaudreuil: Nature getaway close to Montreal
+/- 100km/day loop – one challenge day at 130km (long or short route choice every day)
Departure: Friday, August 25th
Registration: $350 (double occupancy).

Includes:

  • Participation in the fundraising dinner of Saturday evening;
  • Two-night stay*;
  • 3 meals a day (gastronomic dinners) and snacks & beverages on the road;
  • 1 official cycling jersey;
  • Security, moto escorts, first-aid, ‘Broom Wagon’ and mechanical assistance;
  • Discount on accessories and equipment at Cycle Néron shops (Montreal, Boucherville, Brossard, Lachine);
  • Secure bicycle storage at the hotel;
  • Online fundraising system.

*If you wish to reserve the night before the event, please contact the hotel directly and mention that you are part of the group “Ride to fight ALS” in order to keep the same room for their entire stay.

Fundraising requirements: $10,000 per team of 5 to 7 cyclists and 1 500 $ more per additional cyclist or $2,000 per person.

The registration fees cover most of costs of the event. They are not eligible for a tax receipt. By participating in the Ride to Fight ALS, you are committing to raise the minimum fundraising requirement and helping us fulfill our mission.  The Society survives on funds raised through events and we truly appreciate your efforts to reach our goal.

Other participation options are available. For more information about the 3-day challenge or the 2 or 1 day options, click here.

 Get your bike and come ride with us!

Aug
26
Sat
Ride to fight ALS 2-DAY CHALLENGE @ Château Vaudreuil,
Aug 26 all-day
Ride to fight ALS 2-DAY CHALLENGE @ Château Vaudreuil, | Vaudreuil-Dorion | Québec | Canada

Looking for a real challenge? Get your bike and come ride a total of 200km over tow days in the picturesque road of Vaudreuil-Dorion.  With adapted routes for each cyclist level, the ride holds something for everyone.

Lodging at Château Vaudreuil: Nature getaway close to Montreal
+/- 100km/day loop – one challenge day at 130km (long or short route choice every day)
Departure: Saturday, August 26th
Registration: $250 (double occupancy).

Includes:

  • Participation in the fundraising dinner of Saturday evening;
  • One-night stay*;
  • 3 meals a day (gastronomic dinners) and snacks & beverages on the road;
  • 1 official cycling jersey;
  • Security, moto escorts, first-aid, ‘Broom Wagon’ and mechanical assistance;
  • Discount on accessories and equipment at Cycle Néron shops (Montreal, Boucherville, Brossard, Lachine);
  • Secure bicycle storage at the hotel;
  • Online fundraising system.

*If you wish to reserve the night before the event, please contact the hotel directly and mention that you are part of the group “Ride to fight ALS” in order to keep the same room for their entire stay.

Fundraising requirements: $10,000 per team of 5 to 7 cyclists and 1 500 $ more per additional cyclist or $2,000 per person.

The registration fees cover most of costs of the event. They are not eligible for a tax receipt. By participating in the Ride to Fight ALS, you are committing to raise the minimum fundraising requirement and helping us fulfill our mission.  The Society survives on funds raised through events and we truly appreciate your efforts to reach our goal.

Other participation options are available. For more information about the 2-day challenge or the 3 or 1 day options, click here.

 Get your bike and come ride with us!

Aug
27
Sun
Ride to Fight ALS 1-DAY CHALLENGE @ Château Vaudreuil
Aug 27 all-day
Ride to Fight ALS 1-DAY CHALLENGE @ Château Vaudreuil  | Vaudreuil-Dorion | Québec | Canada

You want to be a part of the Ride to fight ALS while enjoying a beautiful day with your children? You can also join our team for the one-day challenge on Sunday August 27. Families are also welcome and registration is only $50 for children 12 years-old and under! Routes between 25 and 70 km will be available while a shortened route will be offered.

Adult: $100 registration until August 11th + $200 fundraising requirement
Children 12 and under: $50 registration + fundraising at your discretion

Registration includes

  • Cocktail, lunch and snacks & beverages on the road;
  • 1 official cycling jersey ;
  • Security, moto escorts, first-aid, ‘Broom Wagon’ and mechanical assistance;
  • Entertainment for the whole family (outside);
  • Discount on accessories and equipment at Cycle Néron shops (Montreal, Boucherville, Brossard, Lachine);
  • Online fundraising system.

The registration fees cover most of costs of the day. They are not eligible for a tax receipt. By participating in the “Ride to Fight ALS”, you are committing to raise the minimum fundraising requirement and helping us fulfill our mission. The Society survives on funds raised through events and we truly appreciate your efforts to reach our goal.

Other participation options are available. For more information about the 1-day challenge or the 2 or 3 day options, click here.

Get your bike and come ride with us!

Sep
5
Tue
Support Group – Monteregie @ Centre Montérégien de Réadaptation
Sep 5 @ 13:00 – 15:00

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

Rooms: Longueuil for caregivers and Montérégie for people with ALS

* Possibility of cancellation if 3 or fewer people register

Logo_Appui

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.

Jun 28 @ 11:00 – 16:00 Club de yacht Pointe Claire
Experience Adapted Sailing “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…” – Ginette Beaudreau,[...]
Jun 29 @ 13:30 – 15:30
We are happy to announce regional phone meetings for people with ALS, caregivers and healthcare professionals. Meet other people touched by ALS in your region. Discuss, share your feelings and concerns and talk about your[...]
Jul 8 @ 11:00 – Jul 9 @ 10:30
The Festival Saint-Lazare au Galop is back! The 2017 edition will take place on July 8 and 9, 2017. For the event, the city center will be transformed to accommodate thousands of citizens, visitors and[...]
Jul 11 @ 13:00 – 15:00 Centre Montérégien de Réadaptation
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[...]