Teresa Buffone leads the Ottawa-Gatineau Myotonic Dystrophy Support Group and is an advocate for the US Myotonic Dystrophy Foundation. She is a former program manager at Health Canada, where she delivered national compensation programs to Canadians, and is a past member of the City of Ottawa Health & Social Services Advisory Committee. Teresa took early retirement after a family diagnosis of myotonic dystrophy (DM) and has worked since 2012 to raise awareness of the disease and the need for an “active care management clinic” for DM patients in Ottawa. She has disseminated information and care guidelines to Support Group families and providers across all provinces, and lobbied local, provincial and national law makers to secure better care and services for DM patients. In 2015 she received the US Myotonic Dystrophy Foundation’s Advocate Award for her tireless efforts to support Canadian patients with myotonic dystrophy.
Within the NMD4C network, Teresa brings in her expertise in myotonic dystrophy support to act as a knowledge user, facilitating knowledge transfer to patients and ensuring the network’s patient-directed output is fit for purpose.