Who we Are & What we do
Alpha-1 Antitrypsin Deficiency Canada Inc. (Alpha-1 Canada) is a national not-for-profit organization committed to advocating on behalf of Canadians affected by Alpha-1 Antitrypsin Deficiency, providing education to patients and the healthcare community to increase awareness and testing for this genetic disease.
Our History
In 2001, a small group of people affected by Alpha-1 (patients, carriers, caregivers) decided that something needed to be done about Alpha-1 in Canada. A committee was formed and a questionnaire was sent to all Canadians whom the committee knew were affected by Alpha-1. The main concerns expressed were:
- the lack of Canadian information on Alpha-1
- patients and their families feeling isolated and left to their own resources
- medical practitioners often unaware and ill-equipped to deal with Alpha-1 patients
- the need for some sort of organizational structure in Canada for those affected by Alpha-1
In October 2001, over ninety people attended a conference in Toronto held for and organized by people affected by Alpha-1 lung and liver disease. For many attending, it was the first time that they had ever met anyone else with this rare disease. Out of that meeting came a determination to develop an organizational structure in Canada whose goals would be to:
- provide information and encouragement to patients and caregivers
- liaise with and provide information to physicians and the wider medical community
- develop relationships with other patient groups who could provide resources and information
Programs and Services
Alpha-1 Canada offers a number of programs and services for patients, their families and caregivers and the medical community. We are always looking for new ways to help and are open to your suggestions. Currently our programs and services are:
- Toll Free Information Line 1-888-669-4583
- Patient Education Days
- Educational webcasts
- Facilitation of peer-to-peer program
- Bilingual print materials for patients, caregivers and family members
- Bilingual print materials for physicians and allied healthcare professionals
- Promotion of wellness and self-management in healthcare programs and services including smoking cessation, nutrition, exercise and other lifestyle changes
- Promotion of and information on testing, early detection and treatment of Alpha-1 Antitrypsin Deficiency
- Advocacy for equitable and affordable access for Alpha-1 Antitrypsin augmentation therapy
- Advocacy for federal government policies addressing orphan drugs, rare diseases, access to treatment, quality healthcare and genetic non-discrimination
- Provide a range of collaborative services to healthcare professionals including consultative participation in policy forums and referrals for patients to researchers for clinical trial recruitment
- Investigate, create and implement on-going methods for organizational growth, data collection and healthcare management
Board of directors
Gary Murphy
Chairperson & Treasurer
gary.murphy@alpha1canada.ca
Gary Murphy resides in Halifax, Nova Scotia. Gary is a Paramedic with the Medical Communication Centre in Nova Scotia, with a background in Community Relations and Paramedicine. Gary was awarded the Queen Elizabeth II Diamond Jubilee medal for his volunteering efforts and he continues to volunteer with the Nova Scotia EMO as an Emergency Communicator. Gary is an Alpha-1 ZZ patient but remains an active marathon runner and athlete. Gary is passionate about promoting the benefits of exercise to Alpha-1 patients across Canada.
Rob Cameron
Vice Chairperson
rob.cameron@alpha1canada.ca
Rob Cameron lives in Regina, Saskatchewan with his wife, Tanya, and his children Emma and Daniel. Rob is an Investment and Wealth Advisor with RBC Dominion Securities. He was diagnosed as an Alpha-1 ZZ in January 2017 and is excited for the opportunity to work with Alpha-1 Canada and it’s mission of Education & Advocacy.
Janet Greidanus
Board Secretary
janet.greidanus@alpha1canada.ca
Janet Greidanus resides in Edmonton, Alberta where she has recently retired from a career as a speech-language pathologist. Janet was diagnosed with A1AD in 2009 and has been involved in the Alpha-1 Community since that time. She joined the Board of Directors of Alpha-1 Canada in 2012.
Pam Bush
Director
pam.bush@alpha1canada.ca
Pam Bush has a degree in nursing and Masters in Leadership. She recently retired after a 40 year career in hospital leadership. Pam lives in Ottawa with her husband. She has three sons and one granddaughter. She was misdiagnosed for 10 years before being diagnosed with A1AD in 2009. The Alpha1 Canada leadership supported her in 2017 as she successfully advocated to her employer for augmentation coverage. She looks forward to working with her board colleagues.
Trevor Roadhouse
Director
trevor.roadhouse@alpha1canada.ca
Trevor is a resident of Burnaby, British Columbia but his heart remains in his hometown of Regina, Saskatchewan. Following his alpha-1 antitrypsin deficiency diagnosis, and learning that Saskatchewan’s formulary cannot list items that contain blood derivatives, Trevor and his wife were left no choice but to relocate to British Columbia, in order for Trevor to receive weekly augmentation therapy. Trevor and his wife, Audrey, have been married for 53 years, with two children and three grandchildren. Although Trevor is retired, he is proud to offer his business advisory skills to a roofing company he co-owns with his son. When not contributing his skills to the family’s business, and volunteering as a board director with Alpha-1 Canada, Trevor and Audrey enjoy international travel – even trips to Florida to watch the Blue Jays during spring training.
Medical advisory board
Dr. Kenneth R. Chapman
M.D., M.Sc., FRCPC, FACP, FCCP
Chairperson
Dr. Chapman is a Professor of Medicine at the University of Toronto and an internationally respected researcher in the field of asthma and airway diseases. Dr. Chapman is also Director of the Canadian Registry for Alpha-1 Antitrypsin Deficiency.
Dr. Jean Bourbeau
M.D., M.Sc.
Medical Advisor
Dr. Bourbeau is associate professor in the Department of Medicine and the Department of Epidemiology and Biostatistics and Occupational Health at McGill University.
Dr. Simon Ling
M.B., Ch.B.
Medical Advisor
Dr. Ling is Associate Professor of Paediatrics at the Hospital for Sick Children, University of Toronto. Additionally, Dr. Ling collaborates in studies of the genetic determinants of liver disease due to cystic fibrosis and alpha-1 antitrypsin deficiency.
Dr. Marsha Speevak
B.Sc., PhD, FCCMG, FACMG
Medical Advisor
Dr. Speevak is Assistant Professor, University of Toronto, Department of Laboratory Medicine and Pathobiology. Dr. Speevak’s laboratory at Credit Valley Hospital provides targeted genotyping (S and Z variants) as well as full gene sequencing of SERPINA1, the gene responsible for alpha-1-antitrypsin deficiency.
Dr. David Wong
M.D., FRCP (C)
Medical Advisor
Dr. Wong is a Hepatologist at Toronto Western Hospital, Toronto General Hospital and St Michael’s. He has an interest in viral hepatitis and non-invasive markers for assessment of liver fibrosis and cirrhosis.
Staff
Angela Diano
Executive Director
angela.diano@alpha1canada.ca
Angela is passionate about community engagement and patient advocacy with a career that has been centred around leading community relations programs for not-for-profit organizations. The foundation of Angela’s career was working with grassroots community service agencies providing crisis intervention, community outreach, program development and championing philanthropic initiatives. Her work with local community programs led her to working with provincial and federal programs specializing in building strategic partnerships and leading collaborations for public health programs, with the Ministry of Community and Social Services, Ministry of Health and Long-Term Care, Trillium Gift of Life Network and Health Canada.
Jessica Cook
Patient Relations Representative
jessica.cook@alpha1canada.ca
Jessica is a dedicated registered nurse committed to patient advocacy and patient empowerment. Jessica has been caring for patients for twenty years, providing patient care in acute care, residential and rehabilitation settings.