Canada’s neuromuscular community deserves policies and support to live with dignity, independence, and opportunity.
To help everyone in Canada’s neuromuscular community achieve their full potential, policy makers must act to remove physical, financial, and social barriers.
Thanks to new treatments, better care standards, and insights from people with lived experience, neuromuscular diagnoses that were once grim now offer chances for longer, fuller lives.
Children with spinal muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD) for example, are now reaching adulthood, pursuing careers, and contributing to society.
While science and people with lived experiences have made incredible strides, policies and support systems have not.
We are driving change by filling gaps through or own programs and services, and urging government to address others through policy change that will help break down barriers for the neuromuscular community.
Our efforts include:
As children with neuromuscular disorders live into adulthood, their care and life needs evolve. Through our Service Specialists, we provide individualized support to help young adults move into this next phase of their life. We have also conducted research into the needs of post-secondary students living with neuromuscular disorders and offered programming like our Transition to Adulthood conference series.
More than 40% of the community members we serve rely on our equipment funding program to access mobility and assistive devices – tools that are essential for safety, independence, and full participation in daily life. Yet in many provinces and territories, most of these devices are not covered by public health systems, leaving individuals to pay out of pocket. Thanks to donor support, we help offset these costs and ensure more people can get the equipment they need. While we recognize governments cannot meet every need, we believe there’s room to do better – and we continue to advocate for more equitable access across the country.
In 2023, we published our landmark report, Bridging the Gap Between Lived Experience and Policy. Developed in partnership with six other organizations, it is helping to shape, inform, and maximize the impact of Canada’s first-ever Disability Inclusion Action Plan. This federal initiative seeks to make Canada more inclusive of the 22% of people in our country who identify as having a disability. Our Bridging the Gap report helped to inform the federal government’s Canada Disability Benefit, which as of Spring 2025 supports eligible working-age Canadians with disabilities. We continue to leverage the report’s insights and recommendations in our ongoing discussions with government about policy changes to support better accessibility and inclusion for the neuromuscular community.
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