Chris Kinchlea — President
Chris is a writer, fundraiser, speaker, and advocate. She and her husband Will have two children: their son Daniel and daughter Gwen. Daniel has had a complicated autoinflammatory journey for most of his life and has been in and out of Toronto’s Hospital for Sick Children, and London Children’s Hospital.
Chris studied Narrative Based Medicine at the University of Toronto, which focuses on utilizing reading writing, and reflection in clinical practice and self-care. As a trained facilitator, she is passionate about teaching writing and art as a form of advocacy and self-care for patients and health care practitioners alike.
Chris’ passion for learning more and educating others about her son’s condition led her to a career in fundraising at the London Children’s Health Foundation and to start the Canadian Autoinflammatory Network to support and empower others living with these rare diseases.
Fiona McArthur — Vice-President
Fiona McArthur began to work in patient advocacy following the diagnosis of her daughter with two separate, but related, Autoinflammatory conditions. She drew heavily from her background in Microbiology and Immunology to both understand her daughter’s condition, and to advocate on behalf of her child. She’s excited to work with the Canadian Autoinflammatory Network and hopes to help other parents and patients to feel prepared and confident in speaking with their doctors. She bring a range of experiences from municipal government, research, higher education and science education to her role at the Canadian Autoinflammatory Network. She lives in Hampton, Ontario with her husband and two children. Everyone in her family has a rare-disease diagnosis.
Ian Stedman — Chair of the Board
Finally diagnosed with Muckle Wells Syndrome in his early 30s, Ian is a rare disease patient, parent, advocate and researcher. An assistant professor in the School of Public Policy and Administration at York University, Ian also holds graduate appointments at Osgoode Hall Law School and in Socio-Legal Studies.
Ian believes that the rare disease community will play a pivotal role in helping to re-shape healthcare as it enters the digital era. His academic work is accordingly focused on the laws, technologies and policies that are driving greater personalization in scientific research, medicine, and healthcare. He currently sits as a Vice Chair of the CIHR Institute of Genetics’ Advisory Board, as a legal member on the Research Ethics Board at Toronto’s SickKids Hospital, and previously held the inaugural research fellowship in Artificial Intelligence Law & Ethics at Toronto’s Hospital for Sick Children’s Centre for Computational Medicine.
As Board Chair, Ian is excited to help establish the Canadian Autoinflammatory Network and to partner with like-minded organizations to build a better future for autoinflammatory patients and families.
Aimy Lieu — Treasurer
Aimy is a rare disease parent and advocate with over 15 years of research, consulting, and strategic planning experience. She is passionate about raising awareness and supporting autoinflammatory patients and families.
Aimy’s time in the private and public sectors has made her adept at working with stakeholders to design policies and processes that recognize the importance of inclusive and diverse perspectives. She believes in being an attentive consensus-builder who can think strategically, use qualitative and quantitative information effectively, and who understands complex policies that can at times overlap or even compete with one another.
Will Kinchlea — Secretary
Will is a research communications coordinator at Western University, helping create the best environment for researchers, scholars and artists to succeed in their work and to communicate their successes to a variety of audiences.
Will’s connection to the autoinflammatory community is through his son, Daniel, whose disease – despite extensive genetic testing – is not yet fully understood. Will specializes in creating words, graphics and videos to help spread awareness, understanding and education about autoinflammatory diseases.