Life with a neuromuscular disorder in Canada is expensive. Individuals and families face not only the daily challenges of managing a complex, often progressive condition, but also the rising financial strain of mobility equipment, home and vehicle modifications, respiratory supports and adaptive devices that are essential for safety and independence.
The Burden of Illness in Neuromuscular Disorders (BIND) Study conducted with researchers at the University of Ottawa and led by clinician-scientist and Muscular Dystrophy Canada Board Member Dr. Jodi Warman-Chardon confirmed what families have been telling us for years: the financial impact of neuromuscular disorders is high and filled with out-of-pocket costs.
More than 1,400 individuals and families participated in the BIND Study, describing substantial expenses and ongoing challenges such as loss of work opportunities, time away from work or school, limited funding for treatments, therapies and equipment, difficulty accessing rehabilitation services (i.e., physiotherapy) and the high costs of traveling to see specialists who understand their condition.
In the absence of cures, the importance of equipment and support services is critical. Yet many families reported long delays in obtaining mobility devices, challenges navigating funding programs and, in some cases, going without equipment that would improve safety, independence or participation in daily life.
Families told us that:
- costs of mobility devices, lifts and home modifications often exceed what provincial programs cover
- repair and maintenance expenses continue to rise each year
- inflation makes even partially funded items difficult to afford
- delays in equipment access can lead to injury, isolation and caregiver burnout plus injury
Across neuromuscular diagnoses and age groups, equipment-related costs were among the most consistently reported burdens second only to lost productivity from being unable to work or needing to miss work because of a neuromuscular disorder.
The BIND Study strengthened what Muscular Dystrophy Canada has long known: families urgently need financial security to support the true costs of living with a disability. This is one of the reasons Muscular Dystrophy Canada has advocated so fiercely for the Canada Disability Benefit, and for the benefit to be delivered without claw backs.
How Donors Are Closing the Gap Today
While advocacy continues for equitable and fair coverage of assistive devices across Canada, donors are making an immediate and measurable impact through our nationwide Equipment Program. Your generosity helps families bridge the gaps identified in the BIND Study and access the equipment that keeps them safe, mobile, and connected.
Donor support funds:
- power wheelchairs that allow children to attend school and participate in community life
- lifts and home modifications that prevent injuries
- respiratory supports that reduce hospital visits and ICU stays
- repairs and maintenance that keep essential equipment functioning
Families consistently tell us that without Muscular Dystrophy Canada’s assistance, they would face long delays, unsafe conditions or unaffordable costs.
Why Your Support Matters Now More Than Ever
- Equipment, repairs and home adaptations are becoming more expensive every year.
- Provincial programs vary widely, leaving many families with significant unfunded needs.
- Without the right support and equipment, risks increase for individuals and caregivers.
We call on donors, partners and supporters to help strengthen our Equipment Program, which often serves as a last resort funder, meaning we step in when public and private programs cannot or will not cover essential equipment. As we continue meeting urgent needs today, we are also advocating for systemic change, including equitable coverage of essential equipment and funding models that reflect the real needs of people living with neuromuscular disorders.
Together, we can reduce the financial burden of neuromuscular disorders, support access to essential equipment and build a future where every Canadian with a disability has the financial security they deserve.
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