Grant and Funding Programs Offered by Myositis Canada (MYOCAN)

Myositis Canada is a national, volunteer-driven, non-profit organization dedicated to improving the lives of people affected by myositis, a group of rare inflammatory muscle diseases. Formed in 2015 and registered as a Canadian charity, the organization combines peer support, education and the funding of Canadian research projects to accelerate better diagnosis, treatment and rehabilitation for patients across the country.

Donations to Myositis Canada are used primarily to fund Canadian research grants for all types of myositis. The organization explicitly highlights that it has already supported projects such as testing a diagnostic tool for dermatomyositis, re-examining scleromyositis with a modern histopathological approach to improve outcomes, and work to identify antibodies that may cause inclusion body myositis. A lay summary on the Canadian Research page also thanks Myositis Canada for providing funding in 2021 for the SOAR study on sporadic inclusion body myositis, which generated pilot data that helped secure substantial follow-on grants from other institutions.

In addition to direct research funding, Myositis Canada acts as a bridge between Canadian patients and the broader research community. It curates educational content from leading experts such as Dr. Mark Tarnopolsky, shares updates on clinical research, and helps connect members with opportunities to participate in registries and future clinical trials.

The organization supports several key groups: people living with myositis, their caregivers and families, clinicians and researchers interested in inflammatory myopathies, and allied health professionals. Through its website and community activities, Myositis Canada provides practical resources on diet, exercise and assistive devices, financial assistance programs and tax credits, as well as links to international myositis associations, support communities and clinical trial listings.

Members can join the “MyoCan” community to access support networks and tailored information. The site’s member stories section shares lived experiences from Canadians with different forms of myositis, helping reduce isolation and illustrating practical strategies for managing progressive disability and planning for mobility needs.

Founded in 2015, Myositis Canada is governed by a volunteer Board of Directors composed of patients, family members and interested professionals, including clinicians and researchers. This governance model ensures that lived experience and medical expertise jointly inform funding priorities and program directions.

The organization’s vision is a world where each new case of myositis is diagnosed and cured within months, with full rehabilitation from disease-related damage becoming routine. Its mission is to support people with myositis, caregivers, researchers and health care providers in the diagnosis, treatment and rehabilitation of myositis. Core values include integrity, honesty, teamwork, community, respect, compassion and inclusiveness.

By combining targeted research grants with education and community-building, Myositis Canada plays a distinct role in the Canadian rare disease ecosystem. Its seed funding helps launch and de-risk Canadian research initiatives, while its patient network and information resources empower individuals to advocate for themselves, access financial supports, adapt their homes and mobility, and stay engaged with emerging therapies and assistive technologies.