À propos de nous

Qui sommes-nous et ce que nous accomplissons

Déficit en alpha-1 antitrypsine Canada Inc. (Alpha-1 Canada) est un organisme national, sans but lucratif, engagé à faire valoir les intérêts des canadiens touchés par le déficit en alpha-1 et à renseigner les professionnels de Ia santé et les patients afin de les sensibiliser davantage à cette maladie génétique et augmenter les tests génétiques.

Notre parcours historique

En 2001, un petit groupe de personnes touchées par le déficit en alpha-1 (patients, porteurs, soignants, membres des équipes de soins) a décidé qu’il fallait intervenir en ce qui concerne le déficit en AAT au Canada. Un comité a été mis sur pied et un questionnaire fut envoyé à toutes les personnes qui avaient été identifiées par le comité comme étant affectées par le déficit en alpha-1. Les principales préoccupations soulignées dans le questionnaire portaient sur les points suivants :

  • Le manque de renseignements au Canada en ce qui concerne alpha-1
  • Les sentiments d’isolement et de vulnérabilité ressentis par les patients et leurs familles
  • Les praticiens souvent peu sensibilisés et mal équipés pour traiter les patients atteints de déficit alpha-1
  • Le besoin de mettre en place une forme de structure organisationnelle au Canada pour appuyer les personnes atteintes d’alpha-1.

En octobre 2001, plus de 90 personnes ont assisté à un congrès à Toronto, organisé par des personnes atteintes de maladies du foie ou de troubles respiratoires liés à un déficit en AAT. Parmi celles-ci, plusieurs rencontraient pour la première fois une autre personne atteinte de ce trouble rare. Ladite rencontre a donné lieu à la détermination de développer une structure organisationnelle au Canada dont les objectifs seraient de :

  • Fournir de l’information et un soutien aux patients et aux soignants
  • Travailler en liaison étroite et échanger de l’information avec les médecins et la communauté médicale en général
  • Développer des relations avec des associations de patients qui pourraient fournir de l’information, des ressources et offrir un soutien.

Programmes et services

Alpha-1 Canada offre plusieurs programmes et services aux patients, à leurs familles et aux équipes de soins et à la communauté médicale. Nous recherchons toujours de nouvelles façons d’aider et nous sommes ouverts aux suggestions. Les services et programmes offerts actuellement sont:

  • Soutien sans frais au 1-888-669-4583
  • Journées d’information pour les patients
  • Webémissions éducatives
  • Facilitation de soutien individualisé et entre pairs
  • Matériel imprimé bilingue à l’intention des patients, de leurs familles et de leurs équipes de soins
  • Matériel imprimé bilingue à l’intention des médecins et autres professionnels de la santé
  • Promotion du mieux-être et méthodes d’autogestion en ce qui concerne les programmes et services
    de santé, y compris la désaccoutumance du tabac, la nutrition, l’exercice et autres changements de
    mode de vie
  • Promotion et renseignements concernant le dépistage et le traitement précoce du déficit en alpha-1
    antitrypsine
  • Sensibilisation pour un accès équitable et abordable au traitement d’augmentation pour le
    déficit en AAT grâce aux remboursements effectués par le gouvernement provincial
  • Sensibilisation auprès du gouvernement fédéral, en vue de mettre en place des politiques
    concernant les médicaments orphelins, les maladies rares, l’accès au traitement de celles-ci, des
    soins de santé de bonne qualité et la non-discrimination génétique
  • Fournir une gamme de services de collaboration à l’intention des professionnels de la santé,
    y compris la participation sur une base consultative, aux forums sur les politiques et l’aiguillage
    des patients, vers les chercheurs pour le recrutement de ceux-ci en vue d’essais cliniques
  • Mise en œuvre des méthodes d’investigation, de conception et d’implémentation de mécanismes de
    croissance organisationnelle, de collection de données et de gestion de la santé.

Conseil d'administration

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.
Maria Sedeno
Director
maria.sedeno@alpha1canada.ca
Maria Sedeno is a co-author of the Living Well with COPD program, a comprehensive self-management program which supports patients and families to do the necessary changes in their lifestyle in order to better manage their chronic disease. Maria has led the national and international developments of the program, and she is currently in charge of preparing a set of educational materials to help increase awareness of AATD amongst COPD patients. She is the Executive Director of RESPIPLUS, a non-profit organization committed to improve healthcare professionals and patients education in the respiratory field.
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.

Comité médical

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.
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. 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. 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. 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.

Personnel

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.

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.