New BIND Study Highlights Financial Burden of Neuromuscular Disorders
Celebrating the Publication of the BIND Study
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.
Read next...
Save the Date: 2027 NMD4C-RARE.Qc Basic Science Research Summer School
NMD4C and RARE.Qc are pleased to announce the 2027 NMD4C–RARE.Qc Basic Science Research Summer School, will take place May 12-14, 2027, at the Université du Québec à Trois-Rivières (UQTR). The Summer School will bring together graduate students, postdoctoral fellows, and early-career researchers for hands-on training workshops, scientific lectures, trainee presentations, networking opportunities, and engagement with leading experts in neuromuscular and rare disease research.
Now Open: 2027 Postdoctoral Research Fellowship Funding Competition
Deadline: Oct 14 2026 | We are happy to announce that applications for the 2027 Postdoctoral Research Fellowship Funding Competition, in partnership with Muscular Dystrophy Canada, is now open. This annual funding competition awards salary support to early-career scientists in interested in advancing their postdoctoral studies in neuromuscular disease (NMD) research.
Congratulations to our 2026 Collaborative Research Training Award Recipients!!!
We are excited to announce the recipients of the 2026 NMD4C Collaborative Research Training Awards, which supports Canadian trainees in their efforts to advance neuromuscular disease research while strengthening national collaboration among neuromuscular research laboratories.