Muscular Dystrophy Canada Mission Matters
April 1, 2014 – March 31, 2015
Muscular Dystrophy Canada’s mission is to enhance the lives of those affected by neuromuscular
disorders by continually working to provide ongoing support and resources while relentlessly
searching for a cure through well-funded research.
This report provides a summary of our services activities - highlighting the work undertaken by our caring staff
and volunteers working in our offices across the country between April 1, 2014 and March 31, 2015.
It is because of generous donors and the fundraising efforts of determined volunteers that we are able to offer
these exceptional services free of charge.
Questions?
Call us toll free
1.800.687.2538
Janice Boyle, Western Region
[email protected]
ext 2101
Stacey Lintern, Ontario
[email protected]
ext 1104
Pascale Rousseau, Quebec
[email protected]
ext 3102
Tracy Ryan, Atlantic Canada
[email protected]
ext 4201
Marla Spiegel, National Office
[email protected]
ext 1103
Who does Muscular Dystrophy Canada serve?
Muscular Dystrophy Canada provides support to people of all ages and backgrounds who are
affected by 162 different types of neuromuscular disorders. The complete list is posted online.
We also support family members, friends, employers, educators and health care professionals
with information, resources and community programming.
You are invited to join our Canada-wide community
Connect with people and stay informed
Sign up today
www.muscle.ca/we-can-help
National Office:
2345 Yonge Street, Suite 900, Toronto, Ontario M4P 2E5
T 416.488.0030 1.866.MUSCLE.8 (1.866.687.2538) F 416.488.7523 W muscle.ca
FINANCIAL ASSISTANCE
Muscular Dystrophy Canada enables people with neuromuscular disorders to lead
independent and healthy lives by helping them obtain assistive devices.
Many people with neuromuscular disorders rely on assistive devices to aid in activities of daily living.
The high cost of these devices can be a significant financial burden for individuals and families,
especially if public or private health coverage is limited or unavailable.
Muscular Dystrophy Canada’s longstanding and respected equipment funding program helps
alleviate undue financial pressures by contributing towards:
 Mobility aids - power and manual wheelchairs, walkers and scooters
 Seating and position aids - specialty cushions, power tilt and lift chairs
 Orthopaedic devices - leg braces, AFOs and orthopaedic splinting
 Access equipment - stair glides, porch lifts and ramps
 Hospital beds and pressure-relief mattresses
 Breathing aids - ventilators and respiratory devices
This year, our direct investment of $1,193,000 helped 504 Canadians to purchase 621
medically-prescribed assistive devices with a retail value of $2,928,000.
Question
How can I access the Equipment Funding program?
Answer
The program is open to all residents of Canada who have a neuromuscular
disorder and meet the program’s eligibility criteria. To find out more, call us at
1.866.687.2538 to speak with member of our Services team. Or visit us online at
www.muscle.ca/we-can-help to download the Application Form.
A Look Inside Programs in Quebec
The way Canada’s health care system is organized and funded has created inequities in provision and
access across Canada. With respect to assistive devices, the province of Quebec has a robust program
to meet the needs of its residents. Yet, the waiting times average 6 months. In response to this limitation,
Muscular Dystrophy Canada devised an equipment loan program to ensure that clients’ needs were being
addressed during the waiting period. We maintain a stock of over 1,500 items that are loaned to clients
based on their specific requirements. The most commonly requested items are walkers, electric lifts and
pool lifts. This year, 200 Quebec residents utilized this program.
In addition, we provided $45,740 to help 315 people with their requests for financial assistance for
services, such as:
 Life line system (40%)
 Massage and other physical therapies (40%)
 Participation in leisure and recreation activities (20%)
Muscular Dystrophy Canada’s Mission Matters: April 1, 2014 – March 31, 2015
Page | 2
SUPPORT
Our passionate Services team provides support to the community in many ways. They:
•
Attend pediatric and adult neuromuscular clinics to support patients and work collaboratively with
health care providers
•
Raise awareness about best practices and ways to prevent and treat respiratory complications
•
Offer opportunities for people affected by neuromuscular disorders to build a community of support
through events like Family Retreats and Bridges to the Future Youth Transitions Program, social
and recreational events, and activities such as the Walk for Muscular Dystrophy
•
Answered 26,800 phone calls and e-mails providing assistance to:
 Children, youth and their family members (18%)
 Adults affected by neuromuscular disorders and their family members (31%)
 Health care professionals, service providers & staff (36%)
 Volunteers, Fire Fighters, educators, employers and general public (15%)
•
Provide individuals with support and tools to help them to advocacy and navigating the complex health
and social services systems. With this personalized assistance, our clients have succeeded in:
 Obtaining access to respiratory care services, therapies and equipment
 Advocating for services to meet personal care needs
 Recruiting professionally trained, qualified attendant care
 Ensuring children are appropriately supported in schools
 Securing and maintaining appropriate housing and home care services
 Accessing respite services for parents and caregivers
About Our Passionate Community Networks and Chapters
Muscular Dystrophy Canada is at the heart of an active and positive community of people whose lives are
affected by neuromuscular disorders. Our goal is simple: to give Canadians living with neuromuscular
disorders the information, tools and support needed to remain healthy active and make informed decisions.
Community Volunteer Chapters and Networks are the grassroots component of our organization made up
of over 30 local groups from coast to coast, who come together to support each other, create awareness and
raise funds to support our mission. This year, across the country:
 Over 2,300 people attended 248 networking events
 Over 140 people attended 22 Educational Forums
 Over 6,000 points of contact were made with clients
 195 requests for financial assistance were granted through Community Services Funds
Think of our Chapters and Networks as an extension of your own family – as a shoulder to lean on, a sounding
board, a source of information, and a cheering squad for parents, spouses, adult children, siblings, partners
and friends of those living with neuromuscular disorders. New members welcome! Join us today! Visit our
website for details on how you can get involved.
Muscular Dystrophy Canada’s Mission Matters: April 1, 2014 – March 31, 2015
Page | 3
ADVOCACY
Muscular Dystrophy Canada is passionate about influencing positive change!
We work together with other like-minded organizations and use our collective voices to identify issues and
influence positive changes at the local, provincial and federal levels to influence systemic changes to health
care and social services across Canada.
In 2014/2015, we contributed to 25 partnerships and collaborations focused on issues concerning tens of
thousands of constituents. Examples from across Canada include:
Western Canada – caregiver supports, access to recreational activities for people with disabilities and
development and uptake of clinical practice guidelines. Improved services and supports for children and
families living with disabilities (inclusive education, transitioning to adulthood and respite) and preparing
for the transitions from youth to adult services.
Ontario – aging with a disability, working with a local health authority to improve respiratory services,
addressing gaps in areas in need of improved services and supports.
Quebec – employment and disability, working with physicians and allied health professionals,
advocated for access to medications and responding to newly proposed legislation.
Atlantic – physical accessibility issues, disability rights, social assistance reform, transportation
strategy, education policies and inappropriate wait-times for sleep lab testing.
Advocacy Impact: Drugs for Rare Disease Framework Established in New Brunswick
What was the issue?
Patients with Pompe disease were unable to access enzyme replacement therapy to treat the rare
condition because, unlike other provincial payers, New Brunswick’s reimbursement program did not
cover this expensive drug.
What was our role in advocating for change?
Muscular Dystrophy Canada facilitated many meetings with government officials to discuss the issues
and present viable solutions. We worked collaboratively with other groups and individuals to make the
case to government for a drug framework that responds to the challenges of living with a rare
disease. Our collaborative activities included garnering media attention and raising the public’s
awareness of these issues.
What was the result?
In August 2014, the New Brunswick government introduced a plan to help alleviate the financial
burden of those with these rare diseases. The plan, which is estimated to cost between $1 – 4 million
dollars to operate, will cover the cost of five drugs for specific rare diseases, include Pompe. New
Brunswick will partner with Ontario to deliver the plan using its Drugs for Rare Diseases Framework.
The framework was established to assess drugs using the best available evidence and recommend
drugs for funding based on clinical criteria.
Muscular Dystrophy Canada’s Mission Matters: April 1, 2014 – March 31, 2015
Page | 4
INFORMATION AND EDUCATION
We are determined to raise awareness about neuromuscular disorders and provide individuals
and their families, allied health professionals, employers, educators and community partners
with information and educational opportunities. In 2014/15, we:

Conducted presentations focused on raising awareness about neuromuscular disorders and
disabilities at 35 schools across Canada reaching over 2,300 students and faculty

Spoke to health professionals, associations and regional authorities. Reached over 1,200
people by delivering presentations to various groups and conferences

Mailed 4,646 Information packages

Continued to circulate publications in English and French to support people affected by
neuromuscular disorders by providing timely and relevant information
Investing in a Bright Future
This year, we continued to invest in building capacity and strength within young adults affected by
neuromuscular disorders. Two key examples, which are both thanks to the generous support from our
corporate partner Safeway and their annual “Making Muscles Move” campaign:
 Hosting our 4th National Empowerment In Action Conference, bringing over 220 people from
across Canada together for a weekend of inspiration, learning and networking
 Awarding 3 post-secondary students with $5,000 in Scholarship Funds
1. Konrad Izykowski (Region: British Columbia)
2. Joshua Ramsay (Region: Alberta)
3. Cole Amy (Region: Manitoba, Saskatchewan and North Western Ontario)
About Cole Amy
Cole was the first person living with a disability to be enrolled into
the Addictions Counseling Program at the Saskatchewan Institute
of Applied Science and Technology. Cole lives by the mantra of
‘never surrender’ and has the continuous drive to stay positive.
Cole’s ultimate professional goal is to become a clinical
psychologist and leader within his local community.
Visit muscle.ca to read about the other scholarship recipients and
to find out about upcoming opportunities to apply for funding.
Muscular Dystrophy Canada’s Mission Matters: April 1, 2014 – March 31, 2015
Page | 5