annual report 2013-2014

ANNUAL REPORT 2013-2014
“Fans, 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, 75 years ago on July 4, 1939
Board of Directors
(2013-2014)
Executive Committee
Luc Vilandré
President
Vice-President, TELUS Health Solutions
Daniel Malandruccolo
Vice-President
Vice-President, Vast-Auto Distribution Ltée
and Groupe MMO Inc.
Dominic Delambre
Treasurer
Delambre, Gagnon CPA S.E.N.C.R.L.
Michel Simard
Secretary
Management and IT Consultant
Administrators
Alain Bérard
Manager, Lanxess Inc
Person living with ALS
Josée Boivin
President, ISMLine
Guylaine Breault
Associate,
Spatium Design de l’Environnement Inc.
Our Board members get involved on every level.
Top row: Dominic Delambre, Luc Vilandré, Guylaine Breault, Claudine Cook, Daniel Malandruccolo, Michel
Simard, Diane Tkalec. Bottom Row: Élyse Claude Léveillé, Alain Bérard, Chantal Lanthier, Caroline Chartier.
Missing : Josée Boivin, Me Boriana Christov, Dr Angela Genge.
Caroline Chartier
Manager, Rolls-Royce Canada
Me Boriana Christov
Lawyer, Canada Revenue Agency
Dr Angela Genge
Proud Partners
Neurologist, Montreal Neurological
Institute and Hospital
Director of the ALS Clinic
Chantal Lanthier
Retired Service Canada employee
Person living with ALS
Elyse Claude Léveillé
Teacher
Former Caregiver
Diane Tkalec
Nurse Clinician/Consultant PERFORM
Research Centre
Former caregiver
Join us on facebook.com/slaquebec twitter.com/SLA_ALS_Quebec
Fiscal year from November 1st 2013 to October 31st 2014 Registered Charity No: 119153187RR0001
Credits Graphic Design: Mylène Duchesneau Texts: Lisa Dutton, Shout! Communications Icons: freepik.com
This report is also available in French.
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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 a few families raised a historic amount of funds and shone a spotlight on
ALS, ratcheting up visibility and awareness. The donations will fuel research into
treatments and hopefully, one day, a cure and will provide the Society with an
unprecedented opportunity to enhance and expand its services.
We know, all too well, how amyotrophic lateral sclerosis affects the whole family.
More than ever we strive to lessen the burden on the families we serve to
help them achieve the best quality of life possible. This year was no exception
among our achievements: we increased the number of support groups held
across Quebec; we nearly doubled the number of people receiving technical
or financial aid and with a special grant from L’Appui Montréal, we hired two
new psychosocial counsellors. Caring of someone with ALS is a 24-hour a day,
seven-day a week job that takes a tremendous physical and emotional toll on
caregivers. The Society has expanded its services for caregivers in Montreal and
will continue to expand them across the province.
In December, we reached out to families, caregivers and health care professionals alike to gage their level of satisfaction with our
current services and to assess their evolving needs. The results of this CROP survey will help us make more strategic investments
in programs that address the most pressing needs of the community we serve.
It is a privilege to work with the Society’s passionate staff, active board of directors, and health professionals who remain
committed to realizing our mission. Thank you all for your leadership, expertise, commitment and contributions.
Everything we have achieved this year and will achieve moving forward is due to our team and the generosity and support of our
donors, our valued partners, our precious volunteers and all the families touched by ALS who inspire us to do the work we do.
Together, we make everything we do possible. Thank you.
Claudine Cook
Luc Vilandré
Executive Director
ALS Society of Quebec
President of the Board
Vice-President, TELUS Health Solutions
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WHAT IS ALS?
Fatal neurodegenerative disease
Amyotrophic lateral sclerosis, also known as:
Motor neurons in
the brain and
spinal cord
degenerate
Life expectancy
80 %
2 to 5
Lou Gehrig’s Disease
Muscles stop
responding to
signals sent by
motor neurons
Motor neurons
communicate
with muscles to
produce
movement
of people
die within
In Canada
years after
the diagnosis
Motor Neuron Disease
Progressive body
paralysis leading to
loss of mobility and
speech with no
impact on senses
ALS is the most common cause of
neurological death in Canada. More
people die every year of ALS than of
muscular dystrophy, multiple sclerosis
and cystic fibrosis combined.
About
3000
people suffer
from ALS
ALS
Can affect anyone:
90% of cases are random
10% of cases are hereditary
Impacts the whole family on
emotional, physical and
financial levels
Unknown causes.
No curative treatment.
LaThe
Société
de la SLAofdu
Québec
ALS Society
Quebec
Offers programs and services for people
with ALS and their caregiver
Funds cutting-edge research projects in
Canada
Raises awareness for the general population, government and healthcare professionals.
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Supporting families during every stage of the disease
Imagine your life is moving along just fine. You are married to the love of your life; your child is a beautiful, young adult;
you have a great job. Then one day you have an odd sensation in your right leg. You chalk it up to fatigue or a pinched
nerve. A few months later you see your doctor. She takes out her little rubber mallet and whacks your leg just below the
knee. Instead of the usual knee-jerk reflex, your leg spasms and doesn’t stop. Clearly something was seriously wrong.
This is what 46-year old Chantal Lanthier lived in
November 2011. Following that first medical exam,
she submitted to a range of medical tests. In January
2013, a neurologist rendered the diagnosis: “You have
Amyotrophic lateral sclerosis (ALS).”
“I had never even heard of ALS before and was shocked
to discover my life expectancy had just shrunk to two
to three years, five if I was lucky,” recalls Chantal. Within
a few days of getting the devastating news, Chantal
visited the ALS Society of Quebec’s website and found
volumes of helpful information. She then gave the Society
a call and spoke with a very sympathetic and calming
psychosocial counsellor. She realized she and her family
would not face this disease alone as the team at the ALS
Society of Quebec would be by their side offering vital
advice, guidance, services and support during every stage
of the disease.
Chantal hosts monthly support groups in Lorraine
Support groups break the isolation
Chantal and her husband Jocelyn truly appreciate meeting others living with ALS. They regularly attend ALS Society of Quebec
support groups and even started one in their lower Laurentians’ community. The first Café Rencontre was held in the couple’s
kitchen, but soon became so popular the meeting was moved to the local community centre. Today, up to 30 people with ALS and
their caregivers attend the monthly gathering, which is facilitated by a psychosocial counsellor from the Society. “These meetings
break the isolation,” Chantal says. “We enjoy a coffee, swap tips and advice. The mood is very upbeat.”
Easing the financial burden
She also appreciates the ALS Society’s Financial Contribution Program, which provides $500 per fiscal year for services not
covered by government programs. Like most living with ALS, Chantal endures painful muscle spasms and uses the funds to hire
a massage therapist to ease her discomfort. Chantal points out living with ALS has a significant financial impact on families and
the Financial Contribution Program helps defray a small amount of the costs.
More than anything, Chantal is very grateful for the dedicated and hard working staff of the ALS Society of Quebec. “They are
active listeners with huge hearts and are always looking for ways to enhance the support and services they provide allowing those
with ALS to live the best life possible.”
Left
Ginette and her loved
ones are regulars at
Chantal’s support group
Right
Yves Brisson (left), living with
ALS and Yves Lafleur (right),
psychosocial counsellor are always
present in Lorraine
5
Caring for the caregivers
It was as if someone had punched him in the gut. Jocelyn Théorêt was
stunned by the news that his 46-year-old wife Chantal Lanthier had
amyotrophic lateral sclerosis (ALS).
Jocelyn has been taking care of his wife for the last two years. He says people don’t
realize how difficult it is to be a caregiver. “The caregiver literally steps-in to take over
for a loved one. As the person becomes less mobile, you must assume all the small
actions they cannot do anymore: from the moment they wake, till they go to bed and
even in the middle of the night. You strive to give them the greatest possible life.”
Digging deep: finding strength
Jocelyn Théorêt and Chantal Lanthier
Jocelyn knows life will get harder as his wife becomes increasingly weaker. “It won’t be easy on my wife and personally, I wonder
if I will be up to the challenge, but I believe we have more strength than we are aware of. When you love someone, you simply find
the energy to continue, to make their life better and to make them comfortable.”
He wishes courage to all caregivers, “Life brings us hardships, but we can overcome when we look for the silver lining. In the end,
you can only live the life you are given.”
The ALS Society of Quebec expands its services
The ALS Society of Quebec recognizes caring for someone with the neurodegenerative disease takes a tremendous physical
and emotional toll on caregivers. Thanks to a very generous grant of $450,000 over three years from L’Appui Montreal, the
Society is adding services specifically designed for caregivers including two psychosocial counsellors, educational materials,
training sessions, social activities and home visits.
“The grant is an acknowledgement of the tremendously important and unrelenting work done by caregivers who are the
backbone of our healthcare system,” says Ms. Claudine Cook, Executive Director of the ALS Society of Quebec.”
Funded by the Quebec Government and the Chagnon Family
Foundation, L’Appui works with local organizations to improve services
and support available to caregivers. The support provided by L’Appui
responds directly to the needs of caregivers on the island of Montreal.
It also allows at the same time to develop and initiate other services
that are specific to caregivers throughout the province.
Some of the services for caregivers introduced:
• Personalized and ongoing support that meet the unique needs of each caregiver;
• Open house information sessions for caregivers who recently learned a loved one have ALS;
•Information about the disease, the services provided by the health system, community organizations and the ALS Society of
Quebec available on the Society’s website (als-quebec.ca) and in a brochure;
• A telephone support line caregivers can call with questions, concerns or to request help;
• Friendly visits by volunteers to see how families are coping;
•Conferences and teleconferences on topics like: how to use medical equipment; how adapt to meet a loved one’s evolving
medical and psychological needs;
• Social activities and caregiver support groups.
6
Our services and programs
Information for people with ALS, caregivers and healthcare professionals
Conferences
Documentation
Newsletters
Resources and Website
Toll-free support line
Support groups
Teleconference
Psychosocial Support
Orientation and reference
Social and networking activities
Regional information sessions
Social activities
Online community
Technical Aid and Financial Assistance
Residential Adaptation Program
Equipment Assistance
Financial Contribution
2013-2014 Key Highlights
Over 2 700 clients served
(people with ALS, caregivers,
healthcare professionals)
First In Memoriam Day
to support bereaved families
Regular presence at the ALS Clinics in Montréal, 395 accepted requests
Québec City and St-Jérôme and new collaborations for Technical and
Financial Aid Program
in Chicoutimi, Outaouais and Montérégie
38 activities for members, caregivers
5 Open House days for newly
or healthcare professionals
diagnosed families
600 participants at our
New program for caregivers thanks to
10 Support groups
conferences and activities
L’APPUI Montreal
for Caregivers in
partnership with
NOVA West Island
Live and web conference on research with Dr Michael Strong,
Dr Heather Durham, Dr Jean-Pierre Julien, Dr Jasna Kriz and Dr Edor Kabashi.
2 5@8 activities and an appreciation
Regional presence in: Capitale-Nationale, Laurentians, Outaouais,
luncheon for caregivers attended by
50 caregivers
Saguenay–Lac-Saint-Jean, Montérégie, Estrie, Lanaudière, Laval,
Mauricie and Côte-Nord
6 “Exchange forums” for
New website and newsletters “The Centaurea” and
healthcare professionals in collaboration
with Island of Montreal ALS Committee
the “InfoXpress” to provide resources, to inform, to engage
and inspire.
7
An eventful year
Celebrity Softball Game
Women’s Edition
On August 1st the first women-only edition
of the Society’s Celebrity Softball Game
was held. Organized in collaboration with
the Regroupement du baseball féminin de
Montréal, this benefit-event brought together
28 celebrities from the sports, news and
entertainment industries.
Ride for ALS reaches $1 million!
From September 12 to 14, over a hundred motivated cyclists
participated in the 7th edition of Ride for ALS, a three-day cycling
event totalling 300 km. Since its creation in 2008 by Board members
Luc Vilandré and Dominic Delambre, the event has raised a total
$1.14 million. “We were only six when we started. Dominic and I
are both touched by ALS, just like many other participants. We bike
300 km each year to honor Quebecers who are living with ALS and
those who have lost the battle,” explains Mr. Vilandré. Together, the Ride
for ALS and ride for ALS City Edition raised over $235,000 in 2014!
New Walk for ALS in the Laurentians
In 2013, Marie-Ève Lemaire lost her husband to ALS, after a threeyear battle with the disease. She soon got involved with different
committees dedicated to the support of caregivers and bereaved
families. In September 2014, Marie-Ève organized the first Walk for
ALS in the Laurentians region.
This summer, thousands of people across the province walked in
support of people touched by ALS. Held in Baie-Comeau, Charlevoix,
Gatineau, Sherbrooke, Quebec City, Montreal, Lennoxville and the
Laurentians, the 2014 Walks raised close to $300,000.
Third-Party Events
Regardless of size, every third-party event
organized by our community contributes in its own
way to increasing ALS awareness. Moreover the
funds help support families touched by ALS at
every stage of the disease and also contribute to
funding cutting-edge Canadian research. Every
person who gets involved in support of our cause
brings comfort and hope to people. On their behalf,
we thank everyone who put their shoulder to the
wheel and developed these benefit-events.
Over 350 people attended Chantal Lanthier’s Brunch
8
Year in review
Members celebrate the 10th anniversary of the Walk for ALS
in Charlevoix
Blogger Julie Philippon shared her touching
Each year, members and volunteers look
story about her dad at our first In Memoriam Day forward to the sugar shack outings
Renowned researchers Dr. Jean-Pierre Julien, Dr. Michael Strong, Dr. Jasna Kriz, Dr. Heather Olympic athletes Caroline Ouellette, Julie Chu, Kim St-Pierre, Charline Labonté
Durham and Dr. Edor Kabashi were part of the Conference on ALS Research on March 19 and Anastasia Bucsis took part in the Celebrity Softball Game – Women’s Edition
Members and their caregivers went apple picking
in October
Members and family had a blast at the
Christmas Lunch Photobooth
Caregivers in Montreal literally connected during our
5@8 Cocktail Night
9
Our volunteers allow extraordinary things
to happen
To honour her dad who was diagnosed with ALS when he was 61-years old, Mylène
Duchesneau took part in the annual Ride for ALS in 2012. The fundraiser allowed
her to make fast friends with several cyclists and to gain a better understanding of
the neurodegenerative disease and the toll it would take on her father, Michel.
“It is up to those of us who have been touched to step up and help out.”
During the ride, she also met members of the ALS Society of Quebec’s staff and
was struck by their generous and sympathetic nature. She was so touched by their
kindness she was compelled to volunteer for the Society. “ALS is a rare disorder, at
any given time some 600 Quebecers are living with the disease. It is up to those of
us who have been touched to step up and help out,” says Mylène. A trained graphic
designer, she now spends four to five hours per month creating Society material
such as brochures, posters, holiday cards and this annual report.
Mylène is just one of the numerous volunteers who each year generously donates
their time and energy to help the ALS Society of Quebec succeed. Volunteers
perform a gamut of jobs including graphic design, photography, planning and
logistics during annual ALS fundraisers, translation, clerical work, hosting third party
fundraisers, and strategic leadership on the board of directors and its subcommittees.
Every volunteer actively makes a difference in the lives of families with ALS.
Volunteers at the 2014 Ride for ALS
Volunteers are the backbone of
the Society
During the exceptionally successful Ice Bucket Challenge volunteers who have been
with the Society for some time, stepped up to help the Society manage the flood of
donations, requests for information, testimonials and the many calls received.
As well, across Quebec, individuals and groups regularly organize local fundraisers
including walks, bake sales, car washes and other activities on behalf of the Society.
These third-party events are tremendously important to the Society.
“We love our volunteers,” says Kate Busch, ALS Society of Quebec Coordinator.
“They are the backbone of the Society and their help and support is invaluable.
Our amazing volunteers enable us to keep our expenses low thus allowing us to
direct our financial resources towards the important services we provide. They allow
extraordinary things to happen for those living with ALS and their caregivers.”
10
Volunteers at the 2014 Walk for ALS in Quebec City
ALS Society of Quebec
Volunteer Program
• 305 active volunteers
• Over 8,000
volunteer hours
• 30% increase of
volunteers over the
last two years.
ALS Canada Research Update
By David Taylor, PhD, Director of Research, ALS Canada
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 number of differences in our Research Program is staggering.
The Arthur J. Hudson Translational Team Grant was conceptualized
in September 2013 and final applications are currently under
review by ALS Canada’s first ever International Peer Review Panel
(IPRP). The Hudson Grant is the largest financial commitment
in our program’s history, but it is also our strongest commitment
to nurturing new therapies for ALS and utilizing the research
infrastructure built in Canada to its maximum efficiency. In addition,
development of an International Peer Review Panel of seven world
experts in ALS research, with varying areas of expertise across the
basic/clinical research spectrum, is a critical advancement for ALS
Canada to continue funding the best Canadian research that will
move the field forward.
As for the state of ALS research, nearing the end of 2014, there
is no better word to use than ‘momentum’. It is your generosity that
has helped to maintain the momentum of key work when it was in
danger of stalling due to lack of government support.
Contributions
towards research
$1,841,375 to ALS Canada
Research Program
$19,422 to Montreal Neurological
Institute and Hospital
$37,258 for the Fondation AndréDelambre’s Research Symposium
In late 2011, one of the biggest breakthroughs in ALS research history came when defects in a gene called C9ORF72 (often
referred to as ‘C9’) were discovered to cause more cases of familial ALS than any other known genetic cause. Being previously
unstudied, yet so important to our understanding of the disease, researchers raced to learn more about this new gene, what its
normal functions were, and how it fit with the other major genetic players in ALS pathology, namely SOD1, TDP-43 and FUS.
If 2012 was about learning how to study C9 and 2013 was about gaining the first look at what it does, 2014 has been about
interpreting that understanding into ways to target ALS for a new generation of therapies. Combined with rapidly advancing
technology, we can only imagine what exciting discoveries will be made in 2015.
At the beginning of 2014, ALS Canada’s Research Program was already on a strategic path to developing novel therapeutic
strategies for slowing the disease’s progression. With your continued, loyal support, as well as the generosity of Canadians and
Brain Canada partnership through the recent Ice Bucket Challenge for ALS, we stand ready to increase our investment in ALS
research and accelerate that plan. Our researchers are ready with visionary projects they couldn’t previously consider, and our
Research Program is poised with infrastructure in place to take ideas efficiently from the concept stage through to clinical trials.
To read the full Research Impact Report from ALS Canada, visit als.ca
Dr François Gros-Louis
Dr Jasna Kriz
Dr Jean-Pierre Julien
Dr Angela Genge
Dr Guy Rouleau
Dr Nicolas Dupré
Dr Heather Durham
Dr Christine Vande Velde
To learn more about researchers in Quebec, visit our website at als-quebec.ca
11
Thank you to our devoted volunteers, tireless participants, loyal partners and generous donors.
Your support fuels the hope of a future without ALS.
Aetios Productions Inc.
Air Canada Foundation
Clinique Dentaire Hélène Bergeron Inc.
Estate of the Late Sheila Lyons
Power Corporation
Franchises Eggsquis
Health Partners Canada
Scott Jones Fund
France Laflamme
LANXESS Corporation
Liaison Can./U.S. inc.
Partenaires Santé Québec
The Tony-Proudfoot Fund
Quebecor World Inc.
Travelway International
TELUS Santé
Trium mobilier de bureau Inc.
The André-Delambre Foundation
Louis Vachon
The Tenaquip Foundation
W.L. Active Wear
Major donors and third party events - $ 500 +
12
A. Girardin Inc.
Académie Privée Socrates-Démosthenes,
Campus II
Acura Plus
Agropur
Aim Metals & Alloys LP
Air Liquide Canada
Ian Aitken
Alimentation Couche-Tard Inc.
Dave Allen
Allstate Foundation
Alouettes de Montréal
Maor Amar
Michel André
Standard Life Anouk Hébert
Aon Benfield Canada ULC
Association des pompiers volontaires de Gaspé
Association Générale des Étudiants Collège A.
Grasset
Assurances Cécyre Inc.
Atrium Innovations
Marc Aubin
Cyrille Aubin
Jean Aucoin
Auto Lallier Québec
Aviva-Association des Employés
Jimmy Azouz
Normand Bach
Daniel Baer
Mark Bantey
Franco Barassi
Finances Québec (Gaétan Barrette)
Tim Bartels
The Barwick Family Foundation
Rex Batten
Archy Donald Beaudry
Ginette Beaudry Presseault
René Beaulac
Dominique Beaulieu
Eric Bédard
Bélanger Laminés inc.
Belcouleurs Inc.
Caroline Bélisle
Pierre Belle
André Belzile
BENCH.
Patrice Bengle
Robert Bermingham
Tony Bhandari
Anshu Bhatia
Luc Blanchard
Bruno Blondin
Jean-Francois Boisvert
Joelle Boisvert
Finances Québec (François Bonardel)
Bonbons Mobiles Inc.
Bonneterie Richelieu
Dany Bonneville
Virginie Bonura
Carlos Botelho
Marie-Mai Bouchard
Dominique Boucher
Noella Boudriau
Brasserie La Poudrière
François Breton
Pierrette Brière
Manon Brochu
Carl Bromwich
Harold and Adina Busner and family
C.H. Express Inc.
C.H.S.L. D Bayview Inc.
France Cabana
Caisse de Bienfaisance des employés et
retraités du CN
Caisse du Complexe Desjardins
Caisse Populaire Desjardins Canadienne
Italienne
René Caissie
Camping du Parc de la Chaudière
Camping St-Emmanuel
Danny Carlomusto
Régis Caron
Carrières St-Dominique Ltée
Cascades Canada ULC
Jerry Casey
Jean Cassar
CEGEP de la Gaspésie et des Iles
Centre du Sport Alary
Lise Charron
Caroline Charton
The Chastell Foundation
Chenail fruits et légumes
Kristel Cheong Youne
Paul Chesser
Frank Chevalier
Marco Chouinard
Cie de Pierre Arco Ltée
CJAD
Wendy & David Clarke
Clinique Acces Méd.
Véronique Cloutier
Club de Golf et centre Sportif Lorraine Inc.
Club Social St-Jérôme
CM Displays & Events Inc.
Coca Cola
Cocktail Ladies
Coffrages Saulnier
Pascale and Paul Coleman
Concordia Stingers Football
Construction Broccolini Inc.
Construction St-Maxim Inc.
Continental Capital Investments Inc.
Jimmy Cordeiro
Louis-Jean Cormier
Patrick Cossette
Lucy Couto and friends
Couvoir Boire & Frères Inc
Couvreur Couv-Toit Inc.
Alexandre Crépin
CTV
N. Cunningham
Michael Cuscuna
Cycle Néron
Albert Dalpé-Messier
Fred Dankoff Holgings
Datcom Inc.
Great West Life Dave Johnston
De Grandpré Chait S.E.N.C.R.L./LLP
Lisa and Fady Debbane
Delambre Gagnon CPA SENCRL
Eric Demers
Jacques Demers
Demilec Inc.
Robert Desbiens
Martin Deschenes
Desjardins Assurances
Desjardins-Caisse d’Amos & Desjardins
Entreprises
DesRosiers/Boone Kanata
Annie Dickey
Dominion NewEnergy Inc.
Patrik Doucet
Annie Dubord
Christian Dugas
Stéphane Dulude
Linda Dupré
Tamara Dupuis
Dr Heather Durham
Eclairage Axis Inc/Axis Lighting Inc
École Des Érables
Ecole Ste-Anne
Empire Canada
Employees of EXFO + EXFO
Employés TELUS
Engineering Undergraduate Society
Entreprise Robert Thibert Inc.
Town of Mount-Royal Figure Skating Club
Essilor Canada Ltée
EvolveR live band
Gordon Farrell
Michel Ferron
Festival Western de St-Tite Inc.
Fidelity Canada
Fidelity Investments Canada ULC
Isabelle Filion
Financière Sun Life, Programme de dons
parallèles, 104A10
Roger Flageole
Fondation Laure-Gaudreault
Fondation TLA
Fonds de bienfaisance des employés de
Rheinmetall Canada
Fonds Louis Garneau
Dupont Ford
Jocelyne Forgue
Nancy Forlini
Brigitte Fournier
François-Bourrin
Ruby Friedman
Diane Frigault
Charles (Chuck) E. Frosst
Orlando and Sophie Funaro
Vincenzo Furfaro
G.T.I. Roll Transportation Services Inc.
François Gagnier
Marie-Pier Gagnon
Louisa Galardo
Galerie du Tapis d’Astous et Frères Inc
Galileo Adult Centre
Mitch Garber
GardaWorld
Dre Genevieve Gaudreau, Chirurgienne
Plastique Inc.
Michel Gaudreau
Stéphane Gauvin
Alain Gauvin
Gaz Métropolitain
GCM Consultants
Genfoot
Dr Angela Genge
Mario Joe Gentile
Raffaele Gerbasi
Gestion Immobilière Progim Inc.
Gestion Kouraje inc.
GFS Montréal
R Gibbons
Roger Gingras
Benoit Girard
Claude Giroux
Herald Gjura
François Godbout
Gouttières A.C. Tremblay
Grand-Portage Automobiles Inc.
Katie Gray
Great-West Life
Gregory J. David Foundation
Groupe Maska
Groupe MMO Inc.
Groupe Morzaco Inc.
Groupe Park Avenue
Groupe Robert
Jacques Hamelin
Hardy-Normand & Associés
Trudy Hartt
Meredith Hayes
Hammie Hill
Paul Hoba
Hotel Omni Mont-Royal
Jean Houde
Jocelyne How
HVL Cyberweb Solutions Inc.
Hyundai Gabriel
IBM Interconnexion
IGA
Immobilière Montagnaise S.E.C.
iNovia Capital
Inter-Power A.K. Corp
Invest Hotels GP Ltd - O/A Hilton Québec
iProspect Canada
Jean-Claude Jacomin
Julie Desrochers/Gowling Lafleur Henderson
LLP
Jake Kakebeeke
John Kandris
We are thankful towards all our donors regardless of their contribution.
Every donation counts
Karine Cousineau Communications
Ajoy Karna
Bobby Katz
Shalom Katz
Stephen Kaufman
Kenworth-Maska
KF Construction Inc.
Gene Kim
Daniel Kirouac
Kitigan Zibi Anishinabeg
KPMG Canada Jean-François Coulonval
Kwitko Family Foundation
Alicja Kwitko
La Société des communicateurs du Québec
(SOCOM)
Francois Labelle
Michel Jr. Labrèche
Martin Labrecque
Annie Lachance
Francine Lachance
Luc Lacombe
Jean T. Lacroix
Mercedes Lacroix
Gérard Lafleur
Lafleur Golf Club (en l’honneur de Mike Soles)
Philippe Lafontaine
Louise Laguë
L’Ami Honda
Isabel Lapointe
Chantal Lapointe
Lapointe Sports
Michel Laprise
Alain Lauziere
Ronald Lavertu
Le Club de Football St-Bruno Inc.
Le groupe JSV Inc.
Le Ministère à Bras Ouverts
Dan Le Rossignol
Isabelle Leboeuf
Trevor Lee
André Legault (Dir.Ville de Québec)
Léger Marketing Inc.
Isabelle Legrand
Lynda Lemay
Les Aigles de Trois-Rivières
Les Amis de la SLA Charlevoix
Les Capitales de Québec
Les Chevaliers de Colomb du Conseil#3193
Côte St-Paul
Les Constructions Valdi-Tech Inc.
Les Emballages Richard Leon, Inc.
Les Entreprises Presqu’ile Inc.
Les Entreprises Truck ‘n Roll Inc.
Les Immeubles Am-Erika inc.
Les Rotisseries du Nord
Les Serres Nouvelles Cultures Inc.
Les Toitures Hogue Inc.
Les Tours Angrignon
Gilles Lesage
Lucette L’Espérance
Lesters Foods Limtied
Fondation St-Hubert
Sylvie Léveillé
LightSpeed Retail Inc.
Line Fortin Photographe
LIVRAISON PARCO INC
Location Pelletier
Loisirs St-Elzéar
London Life Insurance
Allan & Brigitte Lufty
Luxtec
Luxury Retreats International
M Manger Catering
Mantoria,inc
Mapei, Inc.
Marc Sports la source du sports
Marché A. Desrochers inc.
Diane Marin
Tony Masella
Maski Ford Division Trois-Rivières Ford Lincoln
Haim Masliah
McKibbin’s Irish Pub
James McMahon Courtier d’assurance-Vie
Line Ménard
Mercedes-Benz Rive-Sud
Metalware Corporation Inc
PA Méthot
Laura Meyer
Philippe Michaud
Ann-Liese Michaud
Jamil Mirza
Jason Molluso
Molson Coors
Montreal Baseball Project
Montreal Times
Marie-Hélène Moreau
Vicky Morin
Motos Illimitee Inc.
Mount Norquay
MP3 Disques Inc.
MRB & Associates
Gordon Murray
Frances Murray
Eric Nadon
Nakisa Inc Nakisa Inc
Thi Ngoc Nguyen
Dang Khoa Nguyen
Nordik Spa-Nature
OEC Overseas Express Consolidators
(Montreal) Inc
PA Royale
Reiner Padilla
Alessandria Page
Mike Pagé
Parc Six Flags Montréal, S.E.C.
Passive-Action
Steve Pellerin
Michael Penner
Permacon
François Perreault
Simon-Jacques Perreault
PF Résolut Canada Inc.
Amélie Phaneuf
Pharmacie Jean Coutu La Malbaie
Philips Électroniques ltée
Pièces d’auto Jean-Guy André Inc.
Roberto Pietrovito
Simon Piotte
Henri Pitre
Jean Piuze
Egidio Pizzingrilli
Plafonds U.P. Inc.
Plaza Volare
Pneus Touchette Distribution Inc.
Pointe Claire Oldtimers Hockey Club
Manon Poirier
Wilson Poirier
Peter Polatos
Jim Popp
Proceria Consulting inc
Production Wild Time
Produits Alimentaires Italiens Milano inc.
Profenex Granby
Fred Promoli
Janet Proudfoot
Charles Proudfoot
Claude Provencher
Nathalie Y. Provost
Alexandra Pungartnik
Anne Purcell
Quillothon Martin Giroux pour la SLA
Tom Quinn
Arvind Ramanathan
RBC Foundation
RCM Modulaire
RDS
RDTS
Rebox Corp
Lynda Reed
Paul Regimbal
Regroupement du baseball féminin de Montréal
Yves Rémillard
Blaise Renaud
Réseau Sélection
Restaurant Au Pied de Cochon
Barbies Restaurants
Rideau Recognition Solutions
Martin Roberge
Benoit Robert
Anne Robillard
Renée Robillard
The Larry and Cookie Rossy Family Foundation
Michael Sabia
Saint Jean Hyundai
Sunil Sarwal
Benoît Savard
Guy Savard
Luc Savoie
SBC
Rosemary Scott
Doug Scott
Hélène Séguinotte
Lupina Senosier
Services Préhospitaliers Laurentides Lanaudière
Michael Shannon
Andrew C. Sharp
Sheraton Hotels & Resorts
Silanis Technology Inc.
Daniel Simard
David Siscoe
Graman Investments Inc.
Sobeys
Société des alcools du Québec
Solareh
Julie & Derek W. Soles
Soniva Integrated Solutions
Jeff Speak
Spector & Co
Speedo Canada
Standard Life
St-Basile Toyota
Billy Stegiou
Julie St-Germain
Subaru de Laval
Alvin Suissa
Richard Swieca
Dominique Synnott
Target Canada
Caroline Tatta
Technosub
Telesystem
Telops
Teralys Capital inc.
Olimpia Testa
The Gazette
Louise Themens
Thien Chuong Tran M.D. Inc.
Kim Thomassin
Linda Thomson
Thursday’s Montreal
Hockey Tickets Raffle
Toitures Raymond & Ass. Inc.
Hockey Pee-Wee Provincial Tournament in
Jonquière
Tommy Tremblay
Sylvie Tremblay
Trois-Rivières Ford Lincoln Inc.
Denise Trudel
U.N.I Training
Univesta
V Global 7028776 Canada inc
Vallières & Pelletier Inc.
Royal Canadian Legion, Filiale Pointe Claire Branch #57
Vanier College Student Association
Vast-Auto Distribution Ltée.
Robert Vaux
Vigilance Santé
Christiane Vilandré
Ville de Boucherville
Ville de Québec
Vortex Aquatic Structures International
Wales Home
Larry Walker
Nancy Wilkins
Patrick Willemot
Eric Williams
William Yocum
Zed Communications
Ricardo David Zelaya
Zone3
Half-marathon (Anthony Audet)
Yard Sale (Daniel Bélanger)
Montreal Marathon (Damien Bondue)
Engagement Party
(Stéphanie-Alexandra Chartier)
Camilien-Houde Challenge (Dominic Delambre)
André-Delambre Foundation Race
(Josée Delambre)
Bromont Ultra (Marc Hébert)
Teacher dunk tank - Lower Canada College
(Liam McMahon)
Dek Hockey Tournament (Philippe Michaud)
Spaghetti Dinner (Marco Morena)
Ergathon Tony Proudfoot (Brian Morin)
Swim-o-thon (Jérémie Pellerin)
Model Exhibition (Yvon Perron)
Ride - City Edition (Stéphanie Plamondon)
Volleyball Tournament (Famille Pratt)
Bal in bleu (Francine Lachance)
Brunch (Chantal Lanthier)
Poker Pratt & Witney (Michel Lavigne)
Carnaval de Québec (Josey Lefebvre)
Book Sale (Gilles Lesage)
Spaghetti Dinner and bazaar (Loisir St-Elzéar)
Yoga with Marianne Regaudie
Golf CANACCORD|Genuity (Martin Roberge
Easter Brunch (Benoit Samson)
Bike (Amélie St-Pierre)
Bowling Competition (Nancy St-Yves)
Pool Tournament (Ron Williams)
13
The year the world came to know about ALS as a disease
The year 2014 was without question a turning point in ALS fundraising and awareness. Never before has ALS received as
much public and media attention. Nor had ALS ever been in the top 10 of Google keyword search. We are extremely proud of
what the ALS community has accomplished this year. The Ice Bucket Challenge will prove to be a turning point in ALS history.
‘ALS Ice Bucket Challenge’
5th most Googled term in 2014
Over the summer millions of people across the planet dumped
icy water on their heads in support of ALS. In Canada donations
reached $16.2-million including $2.7-million in Quebec. ALS
Societies will invest $10-million in research and $6-million in
programs that deliver critical support to Canadians living with the
disease. The funds will also be used to develop new services that
address the most pressing needs of the community served for the
years to come.
The ALS Societies are also proud to announce that the funds
for ALS research will be matched on a 1:1 basis through a
new research partnership with Brain Canada, bringing the total
investment in ALS research to $20 million. This is the largest onetime investment in the ALS Canada Research Program in history
and has been made possible by the donations received through the
ALS Ice Bucket Challenge and the federal government’s Canada
Brain Research Fund.
Many Montreal Alouettes players had fun dumping buckets of ice water
over participants at the Walk for ALS
The ALS Society of Quebec thanks the 79,000 Quebecers who took the Ice Bucket Challenge and/or made a donation. We are
also indebted to our families who shared their stories with the media and our volunteers who helped answer the flood of phone
calls and issue donation receipts. “While financial results and awareness of the Ice Bucket Challenge remain astonishing, the joy
and warmth felt by families of those affected by the disease is immeasurable. The Ice Bucket Challenge is an unprecedented
demonstration of solidarity that gives hope to all those who are presently battling this fatal disease,” says Claudine Cook,
Executive Director of the ALS Society of Quebec. “We are extremely grateful for this outpour of support.”
Ice Bucket Challenge
Fund Allocation
Surplus allocated
for next 5 years for
special projects related
to programs and
services
28%
Montreal Mayor Denis Coderre was
amongst the many public figures who
took on the challenge
Direct Fees
7%
Participants in the Walk for ALS in Sherbrooke were
eager to take part in the Challenge
Research Contribution to
ALS Canada
65%
14
Financial summary
REVENUE
2013-2014
(without IBC)
$ 648 707
Fundraising
Ice Bucket Challenge (IBC)
-
2013-2014
(IBC)
-
2013-2014
Total
$ 648 707
2012-2013
$ 2 660 950
$ 2 660 950
-
$ 701 664
Government Grants
$ 26 086
-
$ 26 086
$ 24 625
PartenaireSanté - Quebec and Canada
$ 76 307
-
$ 76 307
$ 85 720
Tony Proudfoot Fund
$ 44 885
-
$ 44 885
$ 37 148
General Donations
$ 159 989
-
$ 159 989
$ 136 227
Wills and Bequests
$ 26 741
-
$ 26 741
$ 342 000
L’Appui Montréal
$ 103 178
-
$ 103 178
-
Others
$ 4 614
-
$ 4 614
$ 11 709
Total
$ 1 090 507
$ 3 751 457
$ 1 339 093
$ 2 660 950
EXPENSES
Administration
$ 99 611
-
$ 99 611
$ 91 645
Services and programs
$ 596 924
-
$ 596 924
$ 511 430
L’Appui Montréal
$ 103 178
-
$ 103 178
-
Fundraising and Awareness Direct Fees
$ 57 042
-
$ 57 042
$ 112 603
Fundraising and Awareness Indirect Fees
$ 238 887
-
$ 238 887
$ 235 947
-
$ 192 150
$ 192 150
-
$ 1 727 427
$ 1 898 055
Ice Bucket Challenge Direct Fees
Research Contribution
$ 170 628
Contribution to ALS Canada - Walk & activities
$ 113 948
-
-
$ 1 727 427
Contribution to ALS Canada - IBC
$ 113 948
$ 252 258
$ 200 593
$ 1 727 427
-
Contribution to Neuro (Tony Proudfoot Fund)
$ 19 422
-
$ 19 422
$ 16 408
Contribution to CHUQ for the Fondation
André-Delambre’s Research Symposium
$ 37 258
-
$ 37 258
$ 35 257
Total
$ 1 266 270
$ 1 919 577
$ 3 185 847
$ 1 203 883
Excess (deficiency) of revenue over expenses
($ 175 763)
$ 741 373
$ 565 610
$ 135 210
Revenue without IBC
General
Donations
15%
Tony Proudfoot Fund
4%
Wills and
Bequests
2%
Expenses without IBC
L’Appui Montréal
10%
PartenaireSanté
Quebec and
Canada
7%
Government
Grants
2%
Contribution to CHUQ for the
Fondation André-Delambre’s
Research Symposium
3%
Contribution to Neuro
(Tony Proudfoot Fund)
Contribution to ALS 2%
Canada 9%
Fundraising and
Awareness Fees
23%
Fundraising
60%
L’Appui Montréal
Administration
8%
Services and
programs
55%
Please visit our website to view a detailed version of our audited statements.
15
AMYOTROPHIC LATERAL SCLEROSIS
SOCIETY OF QUEBEC
5415 Paré Street, suite 200, Mount-Royal (Quebec) H4P 1P7
Phone: 514 725-2653 Toll free in Quebec: 1 877 725-7725 Fax: 514 725-6184
Email: [email protected] www.sla-quebec.ca