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

Recognized by MitoCanadaas an outstanding contributor to advancing community and the quality of life for people with mitochondrial disease, Jean was awarded MitoCanada’sCommunity Service Award. Over the years, Jean has shown a devotion to sharing knowledge about what it is to live with this disease.

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. Tarnopolskyhas contibutedexceptional values 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 to and visible for MitoCanadawhen asked. He demonstrates the perfect mix of professionalism and passion.

Tony Smith – Community Event Champion

Tony has contributed exceptional value as a partner in advancing MitoCanada’smission and vision amongst his clientelleand community. Over the years, Tony has shown passion and commitment to supporting MitoCanada. Every year, Grizzly Events has grown its contribution to both awareness raising and fundraising in ways that are both meaningful and impactful.