About us

Who we are & what we do

Alpha-1 Antitrypsin Deficiency Canada Inc. (Alpha-1 Canada) is a national not-for-profit organization committed to providing information and support to people affected by Alpha-1 Antitrypsin Deficiency; informing the medical community about Alpha-1 Antitrypsin Deficiency; and to generate broad awareness about this genetic liver, lung and skin disease.

We are a registered non-for-profit charitable organization governed by a volunteer board of directors and assisted by a medical advisory committee consisting of Canada’s top researchers and clinicians in the field of Alpha-1.

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 support 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, information and support

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 Support 1-888-669-4583
  •  Support programs
  • Patient Education Days
  • Educational webcasts
  •  Facilitation of one-on-one peer-to-peer support
  •  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 through provincial government reimbursement 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

Lesley Kimble
President and Chairperson
lesley.kimble@alpha1canada.ca
As a founding organizer in 2001, Lesley then became the organization’s first President and Board Chairperson (2002-06) before rejoining the Board in 2017. Lesley brings with her an esteemed career in public service, having worked for The Corporation of the City of Kingston for thirty years, with the Department of Recreation and Leisure Services. Though recently retired from her position with the City of Kingston, Lesley continues to use her expertise in leading philanthropic initiatives, advocacy, and event planning for the Alzheimer Society of Kingston, Frontenac, Lennox and Addington, as the Volunteer and Fundraising Coordinator. Lesley’s husband, Rick Kimble, is an “Alpha” (ZZ), thus Lesley and her family strongly support Alpha-1 Canada’s mission.
Gary Murphy
Vice Chairperson and Board Secretary
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.
Jerry Cunningham
Treasurer
jerry.cunningham@alpha1canada.ca
Jerry Cunningham resides in Sudbury, Ontario. Jerry graduated from Laurentian University with an Honours Bachelor of Commerce Degree before earning the designation of Certified Management Accountant (CMA). He is employed as a Financial Controller in the mining supply and construction industry in Northern Ontario. Jerry understands the challenges families experience who are affected by A1AD, having grown children who are both A1AD carriers. Jerry is currently the Alpha-1 Canada Board of Directors’ Treasurer.
Janet Greidanus
Director
janet.greidanus@alpha1canada.ca
Janet Greidanus resides in Edmonton, Alberta where she is a practicing Speech-Language Pathologist. She graduated from the University of Alberta with both a B.Sc. and a Masters degree in Speech-Language Pathology. Her career has focused on working with children in school-based settings. 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 and currently coordinates a support group of Alphas who meet in the Edmonton area.
Beth Haliburton
Director
beth.haliburton@alpha1canada.ca
Beth Haliburton has been a member of the Alpha-1 Canada Board since 2011, becoming the Board of Director’s Vice-President in 2013. She currently works as a Registered Dietitian at The Hospital for Sick Children in Toronto, ON. Beth is a dedicated patient advocate and works tirelessly on behalf of the Alpha-1 community.
David Wilkinson
Director
david.wilkinson@alpha1canada.ca
David Wilkinson resides in St. Albert, Alberta. David and his wife Linda started Points West Mechanical, a successful mechanical contracting company 33 years ago in Edmonton, Alberta. David was diagnosed with A1AD over ten years ago and has been receiving augmentation therapy for more than 4 years. David is an astute business professional and a committed volunteer. David and his wife Linda are active volunteers supporting Alpha-1 Canada activities throughout the country.

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.
Mary Anne Beeson
Administrator
maryanne.beeson@alpha1canada.ca
Mary Anne has twenty years of experience working with volunteers and special event planning. She has led fundraising campaigns and recognition events with many non-profit organizations in Southwestern Ontario. Mary Anne works tirelessly on behalf of patient groups, managing the administration of programs and services.

DISCLAIMER: This website is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this website to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder. Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.