A Year in Review - Muscular Dystrophy Canada

Annual Report
2012 /2013
A Year in Review
board of
directors
Officers
Nancy Cumming, Chair (AB)
Ronald Nicol, Vice-Chair (QC)
Yazmine Laroche, Vice-Chair (ON)
Dave Ferguson, Treasurer (BC)
Allan Gibbins, Secretary (ON)
Directors
Buzz Green (ON)
Debra Chiabai (ON)
Greg Knight (ON)
Jeremy Dixon (AB)
Kara Reid (NB)
Dr. Katie Manders (NS)
Dr. Ken Hastings (QC)
Dr. Lawrence Korngut (AB)
Dr. Louise R. Simard (MB)
Michael Kaye (BC)
Michel Chalifoux (ON)
Paul McGonigal (AB)
Rhoda Beecher (ON)
Rick Mills (ON)
Suzanne Rancourt (QC)
Catherine Sherrard,
Chief Executive Officer
contents
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3
5
6
9
10
13
15
16
19
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22
Message from the Chair of the Board
Message from the CEO
Leading the Way for
the Best Respiratory Care
Youth in Action 2012
Canada Safeway
At a Glance
MuscleFacts: Breaking Down Barriers,
One Classroom at a Time
Here for You & Your Family
Research Grants
Treasurer’s Report and Report of
the Finance and Audit Subcommittee
Financial Summary
A Special Thank You to Our Donors
our
vision
Muscular Dystrophy Canada’s vision
is to find a cure for neuromuscular
disorders in our lifetime.
our
mission
Muscular Dystrophy Canada’s
mission is to enhance the lives of
those affected with neuromuscular
disorders by continually working
to provide ongoing support
and resources while relentlessly
searching for a cure through
well-funded research.
Annual Report 2012/2013: A Year in Review
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M ess a ge f r o m the
chair of
the board
When I think about what’s at the heart of
Muscular Dystrophy Canada, one word
comes to mind: family.
First, there are the thousands of families who
have a loved one living with a neuromuscular
disorder. Over the years, I’ve had the
privilege of meeting many of them. What
strikes me the most is that they don’t define
themselves by the disease, but by who they
are as people. Their determination, courage
and optimism inspire me to be a better
person and do more.
There’s also our extended family who never
give up – Fire Fighters who always ask ‘what
can we do’ to raise more money and
awareness for neuromuscular disease, and
researchers who keep searching for a cure.
They’re at our side every step of the way, and
I’m most grateful. I’m equally thankful for our
family of supporters, whose generosity
makes everything we do possible.
And then there’s our work family. I’m so
proud of our staff and volunteer Chapters,
whose passion, dedication and ‘can do’
attitude ensures we connect with families
in need, effectively deliver our programs
and services, run successful special events,
and engage communities in our cause. Our
enthusiastic and giving Board of Directors
is always looking for ways to make our
organization better, and it’s been my honour
to serve with them.
Mattie J.T. Stepanek, a young poet who
had muscular dystrophy, wrote, “Unity is
strength… when there is teamwork and
collaboration, wonderful things can be
achieved.” I see these words in action every
day at Muscular Dystrophy Canada as we
unite to improve the lives of those affected
by neuromuscular disorders.
If you’re not already a part of our family,
I invite you to join us. Together, we can make
muscles move!
Nancy Cumming
Chair, Board of Directors
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Muscular Dystrophy Canada
M ess a ge f r o m the
ceo
It’s my pleasure to share a few highlights of
our activities and accomplishments over the
past year at Muscular Dystrophy Canada.
Through our services – education, information,
advocacy, support and equipment – we help
improve the lives of Canadians who are
impacted by neuromuscular disease.
Most recently, our team has been developing
a ground-breaking initiative that involves all
of these service areas: respiratory care. This
work includes the development of a new
Respiratory Care Handbook which will provide
those who have a neuromuscular disorder
and their families with the latest information,
resources and treatment options so they can
determine what the best respiratory care is for
their individual situation.
We were also delighted to host our biennial
Youth in Action conference in Calgary,
where delegates discussed and debated
issues related to young people who have
neuromuscular disease. These enthusiastic
youth were eager to share their plans for
college or university, work and living on their
own. They have the same goals as others
their age, and are prepared to do whatever it
takes to make their dreams come true.
In its fifth year, the Walk for Muscular
Dystrophy reached new heights of success,
with 57 events nationwide raising a record
$1.2 million in 2012. We also launched a new
website for the Walk for Muscular Dystrophy
that makes it easier than ever for participants
to get involved and walk, wheel, roll or run for
people with neuromuscular disorders.
Canadian Fire Fighters continue to be a driving
force for our cause. Whether it was braving
chilly winter weather for a rooftop campout,
leading a 48-floor climb in the Montreal Stock
Exchange Tower, or organizing other local
events like Fill the Boot drives, ladder-a-thons,
pancake breakfasts, raffles and car washes,
Canadian Fire Fighters raised over $3.1 million
last year for neuromuscular disease research,
programs and services. We salute these
amazing men and women who are our heroes.
Another important group are the doctors
and scientists who are spearheading muscle
disorder research in our country. Among
them is Dr. Toshifumi Yokota, the Friends of
Garrett Cumming Research Chair, Muscular
Dystrophy Canada. Dr. Yokota and his team
have created a drug cocktail that has shown
in animal studies to have potential for treating
Duchenne muscular dystrophy. This research
gives us all hope that a cure for neuromuscular
disease can and will be found.
As we head towards Muscular Dystrophy
Canada’s 60th anniversary in 2014, our work
continues. I’m grateful to everyone who has
contributed in their own special way to help
those affected by neuromuscular disease. You
make all the difference, every day. Thank you.
Catherine Sherrard
Chief Executive Officer
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“Most of the protocols in this handbook have
never been offered to me. Over the last six
years of dealing with respiratory issues, without
the benefit of a coordinated neuromuscular
health team, I’ve learned to rely on other
strategies of care. The kind of progressive
medical respiratory care outlined in this
handbook will be very welcomed by those
affected by neuromuscular disease and others
who work in this area.”
—Danielle Peers, Paralympic Bronze medalist
and Muscular Dystrophy Canada Ambassador
Photo by Melisa Talsma
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Muscular Dystrophy Canada
L e a d i n g the W a y f o r
the best
respiratory
care
Throughout the past year, Muscular
Dystrophy Canada has been working to
advance a priority issue for all Canadians
who have a neuromuscular disorder:
respiratory care.
Thanks to progress in research and clinical
care, people with neuromuscular disease
are living longer, and more children and
teens who have a neuromuscular disorder
are reaching adulthood. While this has been
excellent progress, the fight isn’t over yet.
Neuromuscular disorders cause progressive
muscle weakness that often affects a
person’s ability to breathe, leading to
infections and respiratory failure. The good
news is that there are therapies available
to protect your respiratory health, and that
proper respiratory care can have a significant
impact on quality of life and longevity.
However, a case for support developed for
Muscular Dystrophy Canada in November
2012 revealed that there are many
obstacles that are preventing people from
receiving optimal respiratory care. Our goal
is to work collaboratively to reduce and
eliminate these obstacles.
In response, Muscular Dystrophy Canada is
producing a series of resources for patients,
families and healthcare providers. The first
piece will be a practical and comprehensive
Respiratory Care Handbook. It is designed
to raise awareness and to help people make
informed decisions about their respiratory
care. Topics include monitoring your lung
function and capacity, determining what
equipment is right for you, choices in
mechanical ventilation, planning ahead for
your breathing needs, and communicating
and advocating for yourself or on your
child’s behalf.
The Respiratory Care Handbook will be
released in September 2013 as part of a
larger Respiratory Care Project launch.
The goals of this exciting and bold
initiative are an empowered and educated
patient population; knowledge translation
from research to practice in the clinical
setting; enhanced access to breathing
equipment; and respiratory therapists and
other healthcare providers with enhanced
expertise and awareness of treating patients
with neuromuscular disorders.
Muscular Dystrophy Canada is committed
to bridging the gaps and developing
opportunities in education, services,
advocacy programs and research related to
respiratory care. Working together with likeminded organizations and partners, and with
the ongoing support of our donors, we’ll
continue to help improve the lives of people
affected by neuromuscular disease.
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youth
in action
2012
Young people from across Canada shared
their knowledge and experiences living
with a neuromuscular disorder at Youth
in Action 2012, Muscular Dystrophy
Canada’s third national youth conference
held August 24-26 in Calgary.
Generously sponsored by Canada Safeway,
this action-packed event saw 61 families
from across the country come together
to participate in interactive workshops,
engage in topical panel discussions, and
be encouraged by their peers and guest
speakers to pursue their dreams with
courage and confidence.
Youth delegates discussed a variety
of issues, including transitioning from
pediatric to adult healthcare services; the
role of disability in society; exploring the
choices, challenges and solutions related
to post-secondary education, employment
and independent living; and dealing with
relationships and sexuality.
Everyone enjoyed two exceptional plenaries
– the “I AM WHO I AM” Campaign led by teens
Bryan Hansraj and Cody Morrison, followed
by “What Matters Most is how YOU see
Yourself” by Executive Coach Trudy Pelletier.
Conference presentations are available on
Muscular Dystrophy Canada’s website.
Youth in Action 2012 attendees worked hard,
but they played hard too! The event kicked
off on Friday with an interactive cooking
workshop that featured strategies to make
cooking fun and accessible for all, followed
by a Western-themed evening reception.
Throughout the weekend, delegates could
“It was so wonderful to see the courage of
these young people, despite their limitations.
They have hope; they have a place in society.
They want to help themselves and find
solutions. It’s great to see parents supporting
their kids and encouraging them to be
For parents and caregivers, there were
breakout sessions with facilitated groups to
talk about issues faced by families affected
by neuromuscular disorders.
independent and to claim their place in life.
The presentations were well-structured, and
the interpretation was very appreciated. We
were treated like kings!”
—Chantal Jutras, Mother and Youth in
Action participant from Quebec
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Muscular Dystrophy Canada
Micaela Evans
Youth in Action participant
socialize in the YIA Lounge, browse the
resource centre or unwind in an adapted
yoga class.
Saturday evening was filled with celebration.
Guests were inspired by the motivational
presentation and amazing performance of
renowned dancer and Muscular Dystrophy
Canada Ambassador Luca “Lazylegz”
Patuelli. With his encouraging mantra, “No
Excuses, No Limits”, Luca invited everyone to
dance with him, and even taught a few of his
signature moves. A DJ kept the party going
and the dance floor filled until midnight.
On Sunday afternoon, 28 delegates joined
their families, Muscular Dystrophy Board
members and staff, local Fire Fighters
and community members for Play On, a
recreational event open to people of all
abilities that featured powerchair football,
wheelchair basketball and zumba/dance.
Youth in Action 2012 was a wonderful
opportunity for people affected by
neuromuscular disorder to learn, connect,
build relationships and get excited about
what they can do to take charge of their
future. As 17-year-old Micaela Evans told
us, “I loved the conference! I made some
really great friends and found the topics very
informative, especially hearing stories of
how other youth have transitioned to living
on their own and their different methods
of doing so. My advice to someone who
didn’t attend and is thinking about going
next time is, ‘Just do it!’ You’ll have an
amazing time and make memories that will
last much longer than the weekend.”
Annual Report 2012/2013: A Year in Review
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“With the help of a Safeway Mobility Grant
towards a Scout wheelchair for our son Luke,
he is a pioneer who is using his strength to
pave the way for others in our community (his
school is becoming accessible!). Thank you for
helping us truly enjoy and celebrate Luke’s life
with your financial support towards his physical
needs. We are deeply grateful and look forward
to seeing how it will improve our lives.”
—Sherwood and Jocelyn Armbruster
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Muscular Dystrophy Canada
canada
safeway
Last year, Muscular Dystrophy Canada was
proud to continue its long-time partnership
with Canada Safeway.
Since 2008, Canada Safeway has dedicated
the month of August to raising funds and
awareness for Muscular Dystrophy Canada
in over 200 stores across Western Canada
and Northern Ontario. Through their Make
Muscles Move campaign, Canada Safeway
raised $1.02 million in 2012 to support
Muscular Dystrophy Canada’s mission.
Thanks to this money, we are able to
achieve meaningful outcomes at both a
global and personal level. These funds
are invested to support advancements
in biomedical research, and provide
individuals affected by neuromuscular
disorders with grants and scholarships.
Safeway Mobility Grants have enabled over
200 families obtain assistive devices to
aide in daily living. Grant recipients like the
Armbrusters wish to express their gratitude
to each and every Safeway customer and
employee who make the Make Muscles
Move campaign an annual success.
Canada
Safeway’s
post-secondary
scholarships help students who have
a neuromuscular disease with tuition,
housing, transportation or attendant care.
education and soccer. In 2012, Keith
was a Business Administration student at
Kwantlen Polytechnic University, and he
led Powerchair Football Canada’s team in
their first FIPFA World Cup tournament in
November 2011.
Keith has a neuromuscular disorder called
Amyoplasia Arthrogryposis, the effects
of which made it impossible for him to
work while pursuing his studies. After the
government funding he received to go to
school was cut, Keith applied for a Canada
Safeway Moving Muscles Scholarship. His
submission was a winner.
As Keith tells us, “The saying ‘knowledge
is power’ has never been more true when
it comes to living with a form of muscular
dystrophy. Whether that knowledge is used
for educating the masses, finding new
adaptive solutions, researching for a cure,
or earning a degree to find your dream
job, it’s undeniably important. Thanks
to the support of Muscular Dystrophy
Canada and Canada Safeway, I finished
my Bachelor of Business Administration
degree and now want to get my MBA. I’m
able to give back to the community by
coaching power soccer, raise awareness
for the disabled online, and continually
fundraise to help those also affected
by muscular dystrophy. Thank you for
enabling me to empower others.”
Keith Knight from British Columbia was
among the first scholarship recipients.
Keith is passionate about two things:
Annual Report 2012/2013: A Year in Review
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at a glance
WHAT ARE NEUROMUSCULAR DISORDERS?
The muscular dystrophies are the name of a group of
genetic disorders that weaken the muscles that help
the body move.
WHAT CAUSES A
NEUROMUSCULAR DISORDER?
Muscular Dystrophy Canada supports people with
muscular dystrophy and related muscle and nerve
diseases. Together, these conditions are referred to
as “neuromuscular disorders”.
The cause depends on the
type of disorder. Some
disorders are due to genetic
mutations, others are
degenerative, autoimmune
or metabolic disorders.
Most neuromuscular disorders are progressive,
causing the muscles to gradually weaken over time.
The severity of the condition and how it affects
individuals varies greatly. Some people experience
muscle weakness, but retain mobility throughout
their entire lives. Others lose the ability to walk, use
their hands, or even breathe on their own.
spinal
muscular
atrophy
distal
myopathy
Desmin
myopathy
acetylcholine
receptor
deficiency
Becker
muscular
dystrophy
CharcotMarie-Tooth
disease
congenital
muscular
dystrophy
oculopharyngeal muscular
dystrophy
Pompe
disease
nemaline
myopathy
familial
amyloid
neuropathy
Bethlem
myopathy
neuromuscular
disorders
myositis
Lac St-Jean
syndrome
mitochondrial
myopathy
myotonic
dystrophy
centronuclear
myopathy
inclusion
body
myopathy
limb-girdle
muscular
dystrophy
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adenylate
deaminase
deficiency
distal
muscular
dystrophy
Muscular Dystrophy Canada
GuillainBarré
syndrome
central core
disease
congenital
myopathy
Duchenne
muscular
dystrophy
carnitine
deficiency
hyperkalemic
periodic
Emeryparalysis
Dreifuss
muscular
Facioscapudystrophy
lohumeral
muscular
dystrophy
hypokalemic
congenital
periodic
myasthenic
paralysis
syndromes
Friedreich’s
ataxia
Muscular Dystrophy
Canada supports people
affected by over 150
different types of
neuromuscular disorders.
This diagram shows just a
fraction of the neuromuscular
disorders covered by
Muscular Dystrophy Canada.
Disorders in dark grey
bubbles are more prevalent
than those in light grey. All
neuromuscular disorders are
considered to be rare or
“orphan” diseases.
31%
INDIVIDUAL
GIVING
VOLUNTEER
CHAPTERS
16%
MONEY
RAISED
BY
11%
OTHER
10%
CORPORATE &
FOUNDATIONS
EVENTS
19%
13%
26%
WESTERN
CANADA
35%
ONTARIO
32%
QUEBEC
7%
OUR
CLIENTS BY
GEOGRAPHY
ATLANTIC
CANADA
DOLLARS
AT WORK
ASSISTIVE
DEVICES
39%
RESEARCH
20%
SUPPORTIVE
PROGRAMS & SERVICES
14%
EDUCATION
INFORMATION
ADVOCACY
14%
9%
4%
YOUR DOLLARS FUND PROGRAMS THAT HAVE AN IMPACT ON THE COMMUNITY THROUGH…
ENGAGEMENT
EMPOWERMENT
INDEPENDENCE
QUALITY OF LIFE
HOPE Together, stronger.
Annual Report 2012/2013: A Year in Review
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“The active participation
of the students was excellent.”
“We are all different with
our strengths and weaknesses.”
“You can do the same things with
a disability, just differently and more slowly.”
— Teachers’ comments following
a MuscleFacts presentation
Photo by Melisa Talsma
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Muscular Dystrophy Canada
MuscleFacts:
breaking down barriers,
o n e cl a ss r o o m a t a t i me
Going to school can be difficult at times for
any youngster. However, students with a
neuromuscular disorder often face a unique
set of concerns. Can they get around inside
the building and classrooms? Are teachers
able to accommodate their needs? What if
they become sick and fall behind? Will they
fit in and make friends?
Questions like these and the steps needed
to address each individual situation can
be overwhelming. That’s why Muscular
Dystrophy Canada developed MuscleFacts,
a free educational resource available in
English and French for educators, parents,
students and the general public to increase
awareness and inclusivity focused on people
with physical disabilities.
Nine-year-old Hugo Moussu goes to
École Terre des Jeunes in Calgary, one
of 30 schools across Canada that has
participated in the MuscleFacts program
over the past year.
Some people at Hugo’s school already knew
that he has Duchenne muscular dystrophy,
but his older brother Robin felt this wasn’t
enough. In May 2012, Robin wrote a letter
to teachers and parents about Hugo and the
importance of student participation in the
Walk for Muscular Dystrophy. The turnout
was amazing – about 100 students joined
the Moussu Family for this special event and
raised $4,115.55.
This action inspired Hugo’s principal and
teachers to bring greater awareness about
neuromuscular disorders to the entire
school, as well as make it easier for Hugo to
be part of the mainstream. This past spring,
they invited Muscular Dystrophy Canada
staff and volunteers to deliver MuscleFacts
presentations to all 335 students at École
Terre des Jeunes.
When it was time for Hugo’s Grade 3 class
presentation, his mom Anne-Claire joined in.
She shared some of her family’s experiences,
showed students the braces Hugo wears
when he sleeps, and talked about other
equipment he uses and the therapies he
does at home.
Today, everyone at Hugo’s school is more
committed than ever to doing what they can
to help their classmate and friend. They’re
organizing a special Walk for Muscular
Dystrophy this year and are continuing to
build a more inclusive school community.
Together, they’re showing that each of
us has the ability to make a difference for
people living with neuromuscular disease.
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“The importance of the support we received
from Muscular Dystrophy Canada is beyond
describable. It gave us a break and a chance to
reconnect without worrying about our son.”
—Eric and Jennifer McSpadden
Photo by Melisa Talsma
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Muscular Dystrophy Canada
he r e f o r
you & your
family
The McSpaddens are one of the many
families Muscular Dystrophy Canada helped
last year. Eric and Jennifer’s son Chance
was diagnosed with Duchenne muscular
dystrophy as well as autism when he just
over three years old. As Jennifer recalls, “We
felt so alone. We were drifting in a world
without any support.”
Then the couple joined the Hamilton Parent
and Child Networking Group, developed
and run by Muscular Dystrophy Canada.
The group meets once a month to provide
support, friendship and information on
issues like funding sources, systems, school
services, clinics, physiotherapy, nutrition,
respite and home care. “It gave us an outlet,”
says Jennifer, “somewhere to go where we
could speak with other families who were
living similar lives to ours.”
visits to their home. She helped the couple
complete applications for additional support,
contacted other service agencies on their
behalf, and was there to listen.
When Karen learned that Jennifer and Eric
hadn’t been out socially since Chance was
born, she contacted a local government
agency to get them respite care. They
initially received 32 hours a month through
this program, as well as additional funding
through Muscular Dystrophy Canada for
some respite care in the evening. This
allowed Eric and Jennifer to have a night out
a few times a year.
Chance is now five and in school. Still, his
parents depend on the six hours of respite
care they receive each week. “Without
Muscular Dystrophy Canada’s support, I have
no doubt we’d be very tired,” says Jennifer.
It was difficult for The McSpaddens to leave “Their fundraising efforts help fund research
the house without Chance. As Jennifer and equipment, but just as importantly the
shares, “Finding care was impossible due to
organization ensures they have caring people
our son’s high needs. He is a wanderer, non- on staff with knowledge and a willingness to
verbal, and incredibly strong and fast! All
listen, support and navigate systems to get
eyes need to be on him 24/7.” To assist the
the best services for us, the clients. We are
family further, the group’s facilitator, services
so grateful. Thank you!”
specialist Karen Dunbar, conducted several
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research
grants
Muscular Dystrophy Canada is dedicated
to excellence in all aspects of scientific
research, including basic, focused and
applied work. We firmly believe that the
best way to find a cure for neuromuscular
disorders is through collaboration,
innovative research and a rigorous
adherence to scientific principles.
Muscular Dystrophy Canada shares its
commitment to research with our many
supporters who, through their generosity,
help take us one step closer to making
muscles move. None of these funds would
exist without our volunteers and donors.
Their generosity, enthusiasm and hard work
make research like this possible.
Since 1999, Muscular Dystrophy Canada
has partnered with the ALS Society of
Canada and the Canadian Institutes of
Health Research to fund neuromuscular
research grants. In the past year, in
addition to continued financial support for
24 ongoing studies, the partners awarded
over $7.5 million to support the following 13
promising new research projects.
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Muscular Dystrophy Canada
Neil Cashman, PhD
University of British Columbia
• Misfolding of Cu/Zn superoxide
dismutase by pathological FUS
and TDP43: relevance to ALS
• 3 years
pho
Jérôme Frenette, PhD
Université Laval, Quebec City, Quebec
• Rank/RankI/OPG: a new
pathway that regulates skeletal
muscle disuse, aging and
disease
• 3 years
Anthony Gramolini, PhD
University of Toronto, Ontario
• Molecular basis of ryanodine
receptor regulation and function
in skeletal and cardiac muscle
• 3 years
Marc Grynpas, PhD
Mount Sinai Hospital, Toronto, Ontario
• Growth arrest and osteoporosis
in Duchenne muscular
dystrophy patients treated with
glucocorticoids
• 5 years
Bernard Jasmin, PhD
University of Ottawa, Ontario
• Post-transcriptional regulation
of utrophin in skeletal muscle:
implications for new therapeutic
strategies for Duchenne
muscular dystrophy
• 5 years
oto
Sanjay Kalra, PhD
University of Alberta
• Magnetic resonance imaging
biomarkers in ALS
• 5 years
Robin Michel, PhD
Concordia University, Montreal, Quebec
• Identifying novel roles of
calcineurin signaling in the
control of complementary
pathways affecting the
dystrophic phenotype
• 3 years
Michael Rudnicki, PhD
Ottawa Hospital Research Institute, Ontario
• Genetic regulation of
myogenesis
• 5 years
Stephano Stifani, PhD
McGill University, Montreal, Quebec
• Regeneration of motor neurons
controlling movement and
respiration from embryonic
stem cells
• 5 years
Stephano Stifani, PhD
McGill University, Montreal, Quebec
• Regulation of motor neuron
identity and circuit development
• 5 years
Jacques Tremblay, PhD
Université Laval, Quebec City, Quebec
• Correction of the dystrophin
gene with zinc finger proteins
and TAL effector nuclease
• 3 years
Panayiotis Vacratsis, PhD
University of Windsor, Ontario
• Molecular mechanisms
regulating myotubularin-related
2 lipid phosphatases mutated
in neuromuscular disorder
Charcot-Marie-Tooth disease
• 4 years
Christine Vande Velde, PhD
University of Montreal, Quebec
• Cell biological mechanisms of
TDP-43 in ALS
• 3 years
More details about these projects are available
in our publication, Research in the Works
2012-2013, available on Muscular Dystrophy
Canada’s website (www.muscle.ca).
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Muscular Dystrophy Canada
treasurer’s report
a n d r ep o r t o f the f i n a n ce a n d a u d i t s u b c o mm i ttee
On behalf of the Finance and Audit
Subcommittee, I am pleased to report on
the financial results of Muscular Dystrophy
Canada for the fiscal year ended March
31, 2013.
Muscular Dystrophy Canada continues to
have a sound financial position. The total
assets of Muscular Dystrophy Canada
reached $9.425 million at March 31, 2013—
a substantial increase of $631,000 over the
$8.794 million recorded at March 31, 2012.
Total funds raised increased to $10.363
million in fiscal 2013, versus $10.278 million
in fiscal 2012.
Chapter revenues went up to $1.113 million
in fiscal 2013 from $1.020 million in fiscal
2012, an increase of 93,000. The dedication
of our volunteers and staff has resulted in
continued increase in revenue from Walk for
Muscular Dystrophy Canada events which
are held across the country between May
and September.
Fire Fighter fundraising remains our single
most important revenue source, generating
$3.198 million in fiscal year 2013 compared
to $2.934 million in fiscal 2012—an increase
of $264,000. This is the first time Fire Fighters
have surpassed the $3 million mark in their
fundraising, an outstanding achievement.
Fire Fighters continue to demonstrate
remarkable commitment to those affected by
neuromuscular disorders. Their contributions
allow Muscular Dystrophy Canada to keep
investing in research, and provide a full range
of programs and services.
Muscular
Dystrophy
Canada
had
expenditures of $5.162 million in fiscal
2013—a decrease of $201,000 from $5.363
million in fiscal year 2012. This decrease
was a result of organizational efficiencies.
Muscular Dystrophy Canada’s total surplus
as at March 31, 2013 was $534,001—an
increase of $156,843 over last year.
We are pleased to report that we have
met our benchmark of three months of
unrestricted operating surplus as at March
31, 2013.
Total charitable programs and services
expenditures in fiscal 2013 were $4.505
million compared to $4.498 million in
fiscal 2012.
On a personal note, I would like to sincerely
thank the members of the Finance and
Audit Subcommittee who gave their time
and support to Muscular Dystrophy Canada
and those we serve. I would also like to
acknowledge the outstanding support
received from our staff who work tirelessly to
provide our committee with the information
and details required to make sound financial
recommendations to your Board of Directors.
Dave Ferguson
Treasurer
Annual Report 2012/2013: A Year in Review
|
19
financial s u mm a r y
Statement of Revenue and Expenditures
2013
2012
$9,817,529
$9,617,238
413,751
131,277
10,362,557
(203,635)
10,158,922
200,500
10,359,422
505,643
154,731
10,277,612
101,581
10,379,193
181,777
10,560,970
4,081,024
1,047,748
33,395
5,162,167
4,265,914
1,066,003
31,106
5,363,023
5,197,255
5,197,947
895,461
1,709,742
1,260,318
267,388
372,005
4,504,914
981,284
1,910,322
918,882
288,264
398,862
4,497,614
Volunteer Support and Governance
352,410
292,216
Excess of Revenues Over Expenditures
Before the Undernoted
Amortization of Capital Assets
Unrealized Gain (Loss) on Investments
Excess of Revenue Over Expenditures
339,931
408,117
(95,205)
289,275
$534,001
(85,522)
54,563
$377,158
Revenues:
General Campaign & Donations
Other Revenue:
Legacies
Government Grants
Utilization of Deferred Contribution
Investment & Sundry Income
Total Funds Raised
Expenditures:
Fundraising
Fundraising Operating Support
Management Fees
Net Funds Available for Programs & Services
Programs & Services:
Research Programs
Services
Education & Information Services
Other Programs
Services Operating Support
Disclosed in compliance with the Imagine Canada Ethical Fundraising & Financial Accountability Code
Total fundraising revenues
Total direct costs & fundraising expenses
Total donations receipted for tax purposes
Total expenditures on charitable activities
2013
10,362,557
4,081,024
4,192,704
4,504,914
2012
10,277,612
4,265,914
4,373,213
4,497,614
Complete audited financial statements available upon request.
Certain comparative figures have been reclassified to conform
to the current year’s financial statement presentation.
20
|
Muscular Dystrophy Canada
4%
LEGACIES
4%
LEGACIES
13% CORPORATE
& FOUNDATIONS
13% CORPORATE
& FOUNDATIONS
19% EVENTS
19% EVENTS
2% GAMING
1% WORKPLACE
2%
GAMING
FUNDRAISING
1% WORKPLACE
1% GOVERNMENT
FUNDRAISING
2013 Source of Funds
2013 Source of Funds
31% FIRE FIGHTERS
16% INDIVIDUAL
GIVING
16% INDIVIDUAL
GIVING
31% FIRE FIGHTERS
17% ASSISTIVE DEVICES
17% ASSISTIVE DEVICES
11% VOLUNTEER
CHAPTERS
11% VOLUNTEER
CHAPTERS
2% SUNDRY &
1%
GOVERNMENT
INVESTMENT
INCOME
2%
SUNDRY &
INVESTMENT
INCOME
4% SERVICES
OPERATING SUPPORT
4% SERVICES
3% OTHER PROGRAMS
OPERATING
SUPPORT
10% FUNDRAISING
OPERATING SUPPORT
10% FUNDRAISING
OPERATING SUPPORT
3% OTHER PROGRAMS
2013 Use of Funds
2013 Use of Funds
41% FUNDRAISING
41% FUNDRAISING
12% EDUCATION
& INFORMATION
12% EDUCATION
& INFORMATION
4% VOLUNTEER
SUPPORT &
GOVERNANCE
4% VOLUNTEER
SUPPORT &
GOVERNANCE
9% RESEARCH
9% RESEARCH
Condensed Statement of Financial Position as at March 31, 2013
2013
2012
Assets:
Cash & Investments
$8,735,055
$8,146,003
Capital Assets
283,823
249,435
Other Assets
406,550
398,362
Total Assets
9,425,428
8,793,800
Liabilities:
Accounts Payable & Accrued Liabilities
Deferred Revenue
Commitments for Research Grants
2011
$8,300,603
236,323
315,546
8,852,472
1,123,024
207,383
979,343
2,309,750
1,010,774
211,082
1,191,902
2,413,758
1,360,070
153,811
1,239,987
2,753,868
1,990,599
761,583
228,228
537,118
3,517,528
1,533,406
919,972
279,861
580,654
3,313,893
1,411,447
1,208,936
272,880
522,211
3,415,474
Total Liabilities
Net Assets:
Restricted for Endowment Purposes
Invested in Board Approved Priorities
Invested in Capital Assets
Unrestricted
5,827,278
5,727,651
6,169,342
737,283
278,133
283,823
2,298,911
3,598,150
702,262
656,534
—
—
249,435
2,114,452
3,066,149
236,323
1,790,273
2,683,130
Total Liabilities & Resources
9,425,428
8,793,800
8,852,472
Deferred Contributions:
Neuromuscular Research
Services
Education
British Columbia Gaming
Annual Report 2012/2013: A Year in Review
|
21
a spec i a l th a n k y o u t o
our donors
Whether as individuals or part of a
group, supporters of Muscular Dystrophy
Canada show how each of us can
make a difference for those living with
neuromuscular disease. People like
seven-year-old Preston Coolidge, who
has Duchenne muscular dystrophy.
Preston and his family live in Lashburn,
Saskatchewan,
about
20
minutes
from Lloydminster. When the town and
surrounding communities heard that his
mom Geri was having a fundraiser called
“End Duchenne” for Muscular Dystrophy
Canada last September, over 300 people
attended this sold-out event. It was a
fantastic evening with dinner, dancing to a
Beatles revival band, a silent auction and
a presentation by Geri about Preston’s
journey since his diagnosis.
The
event
raised
an
astounding
$46,714.55. It’s also had a catapult effect.
Since then, more families in Saskatchewan
affected by neuromuscular disorders have
connected with each other, more local Fire
Fighter departments are getting involved in
fundraising for the cause, and the Walk for
Muscular Dystrophy will be held for the first
time in Lloydminster in 2013. The people
of Lashburn also want to make “End
Duchenne” an annual event, so planning is
underway for this September’s fundraiser.
When asked why she organized the
event, Geri replied, “My reason for doing
the fundraiser is very simple. I want to
give my son a chance. Without hope for
a treatment we have nothing. People’s
donations to Muscular Dystrophy Canada,
whether big or small, give families battling
neuromuscular diseases hope. It’s their
awareness and generosity that will give
Preston and others like him the possibility
of a future.”
“I have Becker’s muscular dystrophy.
I am completely paralyzed and I use a
breathing device, so it’s crucial for me to
have a remote monitoring system, which
makes me feel more secure. I tend to fall
often and this system allows me to be in
touch with emergency responders at all
times. Thanks to you, Muscular Dystrophy
Canada was able to provide me with the
financial help needed to have this valuable
system installed in my home. Thank you for
contributing to my independence and for
giving me a better quality of life!”
—Daniel Pilote, Recipient of a Muscular
Dystrophy Canada Quebec division financial
aid award
Muscular Dystrophy Canada deeply
appreciates the generosity of all of our
donors. Your gifts bring us ever-closer
to finding a cure for neuromuscular
disorders in our lifetime, and give hope to
thousands of people affected like Preston
and Daniel and their families. Thank you!
22
|
Muscular Dystrophy Canada
individual
David Marple
Deborah McPhedran
$ 50 , 0 00 and over
Anonymous
Derek Murphy
Derek Webb
$ 10 , 0 00 – $49,999 Doreen Pye
Jim and Fiona Green Doug and Cindy
John Robert Wells
Andrews
Nancy E. Cumming
Eric Peter Hoguet
Éric Provost
$ 5, 00 0 – $9,999
Errol Saldanha
Andrew and Helen
Evalyn Baranec
Thexton
France Locas
Anonymous
Frank Gibis
Casey K. Clarke
Glenn K. Buckmaster
Colin J. Adair
Greg Wicklund
Jarnail Basi
Guillaume Leblanc
Kathleen Wagner
Guy Bonin
Louis Gagnon
Guy Savard
Rodeen Stein
Ivan and Penny Velan
Sidney Terpstra
James and Debra
Theodore Wise
Cumming
Janel Harle
$ 1, 00 0 – $4,999
Janet Szymanski
A. K. Velan
Jeanine Moore
Alison and Kevin
Jeffrey Sparks
Harrison
Joseph Franchomme
Amar Sheth
Josephine Wasney
Amie Rocket Munk
Judith McKinnonAndré Roy
Martin
Anne McNamara
Julie A. Geronimo
Annette Allen
Ken and Terri Tumack
Anonymous
Kenneth E. Hastings
Beth Baird
Larry J. Cooper
Betty L. Martin
Lili de Grandpré
Bill Knight
Lionel Aspin
Brenda Wilson
Lisa Pottie and Laurie
Brian Keller
Bryson
Bruce E. Dempsey
Lloyd Lawrence
C. W. Goldring
Marc Laplante
Carol-Ann MacDonald Marie-Andrée Paré
Catherine Sherrard
Mark Knoefel
Charles Douville
Martin Huppé
Chris Peirce
Mervin Wirth
Daniel McNamara
Michael Barrett
Daran Simpson
Michael Martin
Michel Chalifoux
Micheline Sauriol
Nancy LeaderGuggisberg
Pat Wilson
Paul Munk
Pierre Falardeau
Pierre-Alexandre
Levesque
Réal Gagnon
Ronald Nicol
Ross Ferguson
Shirley A. Russell
Simon-Pierre Paré
Suzanne Gingras
Tannis Bujaczek
Terry Flanagan
Till Davy
Todd W. Dyck
Tom C. Velan
Tom Miller
Tom W. Turpin
Trent Henry
Troy Jager
Tyler Hayden
Vincent Duval
Yves Lauzon
corporate/
foundation
$ 1 0 0 ,0 0 0 & ove r
Alberta Lottery Fund
British Columbia
Ministry of Housing
and Social
Development
Canada Safeway
Limited
Deeley Harley - Davidson Canada
Lowe’s Companies of Canada ULC
Tribute Communities
$10, 000 – $99, 999
A.W.B. Charitable
Foundation
Alberta Culture
Anonymous
Bank of Nova Scotia
Financial Group
Bell Canada
BMO Financial Group
Bombardier
CIBC Financial Group
CKNW Orphans’ Fund
Community Initiatives
Fund Saskatchewan
Dollarama S.E.C./L.P.
Edmonton Civic
Employees Charitable
Assistance Fund
Fondation Intact
Government Of
Canada
IBM
Les Systèmes Cisco
Canada cie
McMillan, S.E.N.C.R.L.,
s.r.l./LLP
National Bank Financial
Group
Province of New
Brunswick
Royal Bank of Canada
Scott Safety
Shell Canada Products
The Harold Crabtree
Foundation
The Tenaquip
Foundation
The Velan Foundation
Toronto Dominion
Financial Group
Walmart
Annual Report 2012/2013: A Year in Review
|
23
$ 5, 00 0 – $9,999
Langtree Controls Ltd.
Air Canada
Le Devoir
Alberta Treasury
Manulife Financial
Branches
Group
Allstream Inc.
NetApp
American Iron
Osler, Hoskin
& Metal
& Harcourt
Anonymous
S.E.N.C.R.L./s.r.l.
ATCO
R.W. Tomlinson
Avnet
Limited
Bayview Credit Union Reitmans (Canada)
Canadian Tire
Limited
Magasins Associés Richter
CBCI Telecom
Rio Tinto Alcan
Canada Inc.
RX & D Canada’s
CGI
Research-Based
Ciment Québec Inc.
Pharmaceutical
Coramh
Companies
Desjardins Financial
Samson Bélair /
Group
Deloitte & Touche
EMC2
s.e.n.c.r.l.
Eric T. Webster
SAQ
Foundation
SickKids Foundation
Ernst & Young LLP
Société en
ESI Technologies
Commandite
Étude Économique
Gestion Tour de
Conseil / EEC
la Bourse
Canada Inc.
Strategic Charitable
Fondation Virginia
Giving Foundation
Parker
Telus
Gaz Métro
The George and Kay
Hydro-Québec
Goldlist and Family
Ingram Micro
Foundation
Kinsale Private
Union 52 Benevolent
Wealth Inc.
Society
Lacombe Waste
W/Five Seismic Co.
Services - 349977
Ltd
Ontario Ltd.
24
|
Muscular Dystrophy Canada
third party
$ 1 0 0 ,0 0 0 & ove r
Shad’s R & R
$ 2 5 ,0 0 0 – $ 9 9, 999
Environmental
Services Association
of Alberta (ESAA)
Epic Campaign
Lashburn Fundraiser
Sussex Golf for
Muscular Dystrophy
Tournoi de golf
Lallier - Repentigny
Walter Sedlbauer
Cougar Classic
Golf Tournament
$ 1 0 ,0 0 0 – $ 2 4, 999
Barrie Dragon Boat
Deeley Harley
Davidson Golf
Tournament
Easter Egg
Fundraiser for
Vanessa
Elf Run
Halloween Howler
ICR Charity Golf
Classic
Mt. Stewart
Co-ed Slow Pitch
Tournament for
Muscular Dystrophy
Canada
Ride for Doug
Tournoi de Golf
Karl Palin
Trehaven Golf
Tournament
Tyler Banks Annual
Labour Day BBQ
$5, 000 – $9, 999
Death Race
Mingle Jingle Event
Monster Run
Swimming to Make
Muscle Move
named funds
British Columbia Fire
Fighter Student
Bursary Fund
Fonds Jessica Chami
Jeannine Choueri
Friends of Fraser Earle
Fraser Earle
Ilsa Mae Fund
Joe & Rami Chowaniec
Lawrie Goldlist
Memorial Fund
Rodeen Stein & Family
Victoria Foundation
-Emily Elizabeth
Stoneham Fund
realized
bequests
Estate of Allan Cecil
Johnston
Estate of Catherine
Essauloff
Estate of Craig Allan
Buss
Estate of Duncan
John Allan
Estate of Ernest
Wheeler
Estate of Gordon
Lawson Edgar
Estate of Harvey
Clifford Hendsbee
Estate of James
Martin Burns
Estate of Kathleen
Garvin
Alexandre St-Pierre
Recipient of the JACO robotic arm
friends of
safeway
Estate of Kenneth
garrett
making
Morris
cumming
muscles
Estate of Margaret
research
move
Isabel Ruth Pratt
chair,
campaign
Estate of Margaret
muscular
$ 1 ,0 0 0 ,0 0 0 & ove r
Joan Hitchcock
Canada
Safeway
dystrophy
Estate of Rita Schmitz
Canada Safeway
canada
Estate of Thelma
Foundation
Ashif and Zainul Mawji
Henrietta Christina
Cormode & Dickson
Atkinson
Construction Ltd.
The John A.
Sanderson & Family John and Janet
Howard
Trust
rachel fund
$100, 000 & ove r
Tribute Communities
We apologize for any
misspellings or omissions.
Please call 416-488-0030
to inform us of any
changes. Names
appearing in italics
indicate those who are
creators of the funds.
locations
National Office
Western Canada
Atlantic Canada
Quebec
e info@muscle.ca
e infowest@muscle.ca
e infoatlantic@muscle.ca
einfoquebec@muscle.ca
2345 Yonge St
1401 West Broadway
170 Cromarty Dr
1425 René-Lévesque Blvd W
Suite 900
7th Floor
Suite 222
Suite 506
Toronto, ON M4P 2E5
Vancouver, BC V6H 1H6
Dartmouth, NS B3B 0G1
Montreal, QC H3G 1T7
t 1-866-MUSCLE-8
t 1-800-366-8166
t 1-800-884-6322
t 1-800-567-2236
416-488-0030
604-732-8799
902-429-6322
514-393-3522
f 416-488-7523
f 604-731-6127
f 902-425-4226
f 514-393-8113
8944 182 St NW
56 Avonlea Ct
Centre hospitalier
Ontario
Belmead Professional Centre Suite 203
de Jonquière, C.P. 15
einfoontario@muscle.ca
Suite 200
Fredericton, NB E3C 1N8
2230 rue de l’Hôpital
Edmonton, AB T5T 2E3
t 1-888-647-6322
7th Floor
2345 Yonge St
Suite 901
Toronto, ON M4P 2E5
t 1-800-661-9312
506-450-6322
780-489-6322
f 506-458-2205
t 1-877-295-7911
13 Minstrel Dr
f 418-695-7761
f 780-486-1948
t 1-800-567-2873 ext. 160
416-488-2699
Jonquière, QC G7X 7X2
418-695-7760
901 4th St S
Quispamsis, NB E2E 1S5
Suite 104
t 1-888-696-5150
South Martensville, SK
506-849-8459
150 Isabella St
S0K 0A2
f 506-849-3829
Suite 215
t 306-382-2172
f 416-488-0107
Ottawa, ON K1S 1V7
t 1-866-337-3365
825 Sherbrook St
613-232-7334
Suite 204
f 613-567-2288
Winnipeg, MB R3A 1M5
t 1-888-518-0044
383 Richmond St
Suite 915
204-233-0022
muscle.ca
f 204-975-3027
London, ON N6A 3C4
t 1-877-850-8720
519-850-8700
f 519-850-8701
To view our digital
version, please visit
www.muscle.ca/annualreport.
Cover photo by Melisa Talsma
Charitable Registration Number:
10775 5837 RR 0001