Patient and Community Advocates


Meet some of MitoCanada’s exceptional patient and community advocates, we celebrate their devotion to the supporting the mitochondrial disease community 

Jean Shepherd – Community Advocate

Jean Shepherd has been recognized by MitoCanada as an outstanding contributor to advancing community support and knowledge about mitochondrial disease, and was awarded MitoCanada’s Community Service Award. Over the years, Jean has shown a devotion to sharing knowledge about what it is like to live with this disease and how to advocate for your health.

Marilyn Macaulay – Patient Advocate and Research Advocate

Marilyn Macaulay is Family Caregiver Advisor for the Embrace Project, a Changing Care project funded by the Change Foundation, at Cornwall Community Hospital.  The focus of the project is to co-design processes and resources to improve the experience of family caregivers in the mental health & addiction system.  Marilyn’s two daughters died of mitochondrial diseases in 1982 and 1984. She feels strongly that patients should get involved in research and her family is presently taking part in a research study to identify biomarkers for bipolar disorder. Marilyn is also a member of the mitoNETPatient Partner Advisory Committee to help integrate the patient voice in research.

Joanna Frketich– Media Champion

As a reporter for the Hamilton Spectator, Joanna has made an outstanding contribution by raising public awareness of mitochondrial disease, dysfunction and/or health through her news articles. She has written heartfelt stories that have brought to life what it is like to live with mitochondrial disease.

Dr. Mark Tarnopolsky– Healthcare Advocate

Recognized for his outstanding contribution as a healthcare champion, Dr. Tarnopolsky is a leading clinician and researcher who has also contributed as a partner and champion for MitoCanada. His service as an advisor to the staff and Board has been commendable and we value his willingness to be available and visible to support the patient community and MitoCanada. He demonstrates the perfect mix of knowledge, professionalism and passion.

Tony Smith – Community Event Champion

Tony has contributed exceptional value as a partner in advancing MitoCanada’s mission and vision within his community. Over the years, Tony has shown passion and commitment to supporting MitoCanada through his exceptional slate of sporting and endurance events. Every year, Grizzly Events has grown its contribution to both awareness and fundraising in ways that are both meaningful and impactful.