“I view patient engagement not as an “add-on” to research, but as essential to its purpose for collaboration across disciplines and sectors, building momentum toward earlier diagnoses, better treatments, and improved quality of life. Patient partnerships have guided my research from the start—collaborations with the Spastic Paraplegia Foundation provide access to biomaterials, funding, and dialogue with families who live with the condition every day, like HSP patient advocate Linda Lafontaine. Linda has helped me shape this project, build bridges between science and lived experiences, and ensured that this research truly serves those most affected.”

Funded and supported by the Spastic Paraplegia Foundation.

Want to contribute your samples to our project?

You can send us a CD or the MRI scans, email us at ruwan.bedeir@mail.mcgill.ca or roberta.lapiana@mcgill.ca.