John Adams is a seasoned management consultant, policy strategist, and passionate advocate for Canadians with unmet health needs. With decades of experience in governance, public policy, and senior leadership, he has been instrumental in advancing the mission of CanPKU+ and the broader rare disease community in Canada.

As co-founder and longtime President and CEO of CanPKU+, John has shaped the organization’s growth and national impact. Effective July 1, 2025, he transitions from his executive leadership role into a new role of Advocacy Advisor. In this roles, John will continue to lead critical efforts to improve access to diagnosis, care, and treatment—particularly in the areas of public policy and the Disability Tax Credit program.

John’s advocacy journey is deeply personal. At age nine, he witnessed his mother undergo the first open-heart surgery in Canada. As a parent, he fought to secure early treatment for his son with phenylketonuria (PKU), one of the first Canadians to benefit from Health Canada’s Special Access Program thanks to a clinical trial in the U.S. As a caregiver to his late wife Marita, who lived with ALS and frontotemporal degeneration (FTD), John developed a profound understanding of the challenges facing families affected by neurodegenerative disease.

He is a founding trustee and former board chair of the Global Association for PKU (GAP), and a senior fellow at the Macdonald-Laurier Institute. A widely published lay expert on newborn screening, John has presented across Canada on how early detection—including for PKU—can change lives.

Beyond CanPKU+, John serves as Chair of the Board of the Best Medicines Coalition, a national network of 29 patient organizations advocating for timely and equitable access to medications. He also co-chairs the Disability Tax Fairness Alliance and volunteers as an advocate for Canadians unfairly denied the Disability Tax Credit—successfully appealing many cases at the Tax Court of Canada.

John holds a political science degree from York University. He began his career as a journalist at The Globe and Mail, later served as Chief of Staff to an Ontario Cabinet Minister, and was elected to Toronto City Council three times, including a term as Budget Chief—where he remains the only Budget Chief in over 60 years to reduce property taxes. His public service included board roles with Toronto Public Health and the University Health Network.

John Adams continues to be a cornerstone of the rare disease community in Canada, providing unmatched expertise and an unwavering voice for families and patients nationwide.