Learn how we partner with the neuromuscular community – both to inform our work and so we can champion the value of lived experience in others’ research initiatives, too.
Nobody understands the needs of the neuromuscular community better than those who are personally affected. Fortunately, the voices of people with lived experience are increasingly informing neuromuscular research and policy.
Read on to learn about current opportunities to be part of neuromuscular research as well as past ways the community has informed our work.
Clinical trials for neuromuscular disorders are on the rise in Canada, which means there are more opportunities to participate in studies that could become the treatments of the future. Help shape the future of neuromuscular care.
Take action:
Your personal experience living with a neuromuscular disorder gives you expertise that can’t be learned through books or schooling. If you are interested in sharing your lived experience to help improve research, policy and care, you could be a great fit for our Experts by Experience program. We’ll provide you with training and connect you with exclusive opportunities aligned to your interests — helping you channel your desire for change into meaningful actions.
Contact us at research@muscle.ca or 1-800-567-2873 x1114 to learn more.
Your journey through the healthcare system matters, and understanding it is the first step towards change. That’s where our journey maps come in: they’re visual tools based on information and discussion with real people across Canada affected by neuromuscular disorders. We are often in the process of developing journey maps or planning future ones to develop. If you are interested in contributing to a journey map, please contact us at research@muscle.ca or 1-800-567-2873 x1114 to learn more.
Journey maps currently in development:
Are you wondering if a journey map already exists for your neuromuscular disorder? We have journey maps for the following:
Our Here 2 Hear program brings together people across Canada with a common connection to the neuromuscular community: for example, parents to children under the age of 3 with a neuromuscular disorders (NMD) or people affected by a specific neuromuscular disorder. These virtual round tables help us to hear directly from people in the neuromuscular community on a specific topic to help inform our work.
To learn about upcoming roundtables through our Here 2 Hear program, visit our events calendar.
What would the impact be on Canadian society and our economy if people living with neuromuscular disorders faced far fewer barriers than they do today? That’s the question we are working to answer in partnership with the University of Ottawa and CIHR. Our study will uncover the full social and economic impact of NMDs, going beyond the obvious expenses to capture hidden costs like time in hospital, missed work and school, medications, assistive devices, and more.
Selecting the right university or college is vital for students with neuromuscular disorders, who must consider accessibility and support services crucial to their academic success and well-being. We engaged post-secondary students living with NMDs to better understand their needs and supports that would be beneficial to them as they pursue their studies. Read about our findings.