NMD4C: The Neuromuscular Disease Network for Canada

We are delighted to share that the BIND study, “Financial Toxicity and Its Determinants in Individuals Living With Neuromuscular Diseases,” has been published in Neurology (2025). This is the first of its kind in Canada to document the true costs of living with neuromuscular diseases

This achievement reflects the strength of collaboration. Under the leadership of Dr. Jodi Warman-Chardon, the study was made possible through the contributions of Dr. Alyssa Grant, our members Dr. Ian Smith and Dr. Lola Lessard, and our investigators Dr. Homira Osman, Dr. Hanns Lochmüller, Dr. Hugh McMillan, Dr. Gerald Pfeffer, Dr. Lawrence Korngut, Dr. Cynthia Gagnon, Stacey Lintern, Dr. Kathryn Selby and Dr. Kednapa Thavorn

Drawing on the voices of more than 1,400 Canadians, the study reveals the widespread financial pressures faced by individuals with neuromuscular disorders and their caregivers. Among the key findings:

• Three-quarters of participants reported incomes below the national median, largely due to reduced employment.
• 70% of respondents experienced moderate to severe financial strain—worse than levels reported for many common chronic conditions, including cancer.
• Caregivers consistently reported significant financial burden.
• Financial hardship was particularly pronounced among those with lower incomes or education, members of racialized communities, individuals unable to work, students, early retirees, and those living with autoimmune myopathies, spinal muscular atrophy, or limb-girdle muscular dystrophy.

The BIND study was supported by the Canadian Institutes of Health Research (CIHR), with additional support from Muscular Dystrophy Canada (MDC) and our research network.