Alumni IMHA PERA members

Deb Baranec

Patient Advisor, Deb Baranec is a retired Auditor who has lived with Knee Osteoarthritis (KOA) for 35 plus years, resulting in several surgeries and wearing 5 different braces before having total left knee replacement (2010) and total right knee replacement (2015). Getting her mobility back, she turned to bettering her overall health by losing almost 190 pounds.

Deb has become an advocate for bone and joint health by becoming more involved in the Alberta Bone and Joint Health Strategic Clinical Network, which included participating and presenting at a workshop for Obesity and Osteoarthritis. Deb has also participated in the early development of a study on the impact of obesity on gaits after total knee arthroplasty, and has provided input as a consumer representative investigating the effects of prebiotics supplements on chronic inflammation for obese patients with knee osteoarthritis. Deb has presented and shared her story and journey to wellness with third year medical students and when asked provides motivational talks to Weight Watchers.

Deb currently has an ongoing advisory role to a University of Calgary research group for a new tri-compartment brace that will be going into pre-clinical trials later in 2020. Additionally she is working as a patient advisor with the University of Alberta on a research study “Coping with COVID 19: Impact of Delayed Elective Surgeries - Mental Health & Substance Use Needs and Delivery.

Deb is a PERA (Patient Engagement Research Ambassador) with CIHR-IMHA, and Patient Partner providing advice on learning modules for Clinical Trials Training Programs - CANTRAIN, promoting patient participation and engagement through clinical trials training.

Beth Ciavaglia

Beth is a physiotherapist who works in Quality and Risk Management in long-term care. A recent breast cancer survivor, Beth lives with the musculoskeletal limitations brought about due to radiation and multiple surgeries. After working for 18 years at the front line as a physiotherapist in acute care, she is an expert both professionally and personally on how physical limitations and pain can affect quality of life. Beth prides herself as bringing the patient perspective to her advocacy work, especially in research and systems design. In addition to taking on the Patient Engagement Research Ambassador role, Beth is on the Board of Directors of a Arnprior District Health and Vice Chair of the Patient and Family Advisory Council for the Ontario Institute of Cancer Research.

Jim Kempster

Jim Kempster is a retired meat inspector and retired Medical Laboratory Technologist. His work experience also includes several other disciplines including work as a logger, labourer, truck driver, milk man, and as a welder in the Royal Canadian Armed Forces for an enlistment term of three years.

He was born with a congenital hip dislocation. He was treated at the Crippled Children's Hospital in Vancouver. This condition did not inhibit him from being very physically active for the first thirty years of his life. Two health challenges took place during his teens at which times he suffered bouts of Rheumatic Fever. After participating in a YMCA program of running to honour the Centennial in 1967, he began to experience an increasing amount of hip pain. Running was curtailed. He was told he was too young to receive a hip replacement. Finally, the first hip prosthesis was done in 1979, and the second in 1981. Full activity was restored. The first prostheses lasted for12 and for 16 years at which times the Teflon sockets wore out. (He had gone back to jogging!) The left side revision is still intact but the right side has been replaced five more times. Knee pain throughout the years has resulted in both knees being replaced. Arthritis has plagued Jim increasingly throughout the past years with the major pain coming now from the shoulders and hands. He has had also operations for carpal tunnel and to release locking fingers.

Throughout the past twenty-five years Jim has been an active advocate to get better treatment for sufferers of arthritis. Furthermore, Jim has worked as a consultant with The Canadian Orthopaedic Society. This has resulted in his being put in contact with patients or prospective patients recovering from or anticipating joint replacement. Contact was made in order to provide perspective and encouragement. Having had experience for several years as an ambassador for the Orthopaedic Society, Jim is well motivated to exercise a dedicated participation with the Patient Engagement Research Ambassadors. His experience in a hospital setting and as an advocate for arthritis sufferers has given him much incentive to continue to help other sufferers and to influence health care. Love and compassion have their foundation in care for others.

Trinity Lowthian
Twitter: @TrinityLowthian

Trinity Lowthian is currently completing her Honours Bachelor of Food and Nutrition Sciences at the University of Ottawa and will graduate in 2024 as a Registered Dietitian. She is also a Team Canada para-fencer and competes internationally in wheelchair fencing.

Having been involved in research and patient engagement for several years, she brings a strong voice to her new role as an IMHA Patient Engagement Research Ambassador. As a member of the Youth Advisory Committee for The Canadian Collaborative for Childhood Cannabinoid Therapeutics, Trinity has spoken at international conferences about the importance of involving patients in research and has contributed to the development of several journal articles and the methodology of studies. She has also had experience in a student internship position at the Ottawa Hospital Research Institute working with patient partner engagement when developing Core Outcome Sets for venous thromboembolism (blood clot) studies. In her new role as a Patient Engagement Research Ambassador, she looks forward to bringing her personal experience with musculoskeletal health to continue advocating for what matters to patients.

Linda Niksic
Twitter: @LindaNiksic

Linda Niksic is dedicated to improving the lives of individuals and building capacity in organizations, to be purposeful, inclusive by design, user centric and high performing. With over 20 years of experience in federal public service and in non-profit, municipal government, private and academic sectors, Linda’s leadership and experience living with muscular dystrophy, has led to sustainable results improving our community. This includes public relations work to help save Ottawa’s historic Aberdeen Pavilion from demolition, to leading a Youth Safety Audit in Ottawa’s Chinatown where young women requested a bus stop relocation from in front of a pool hall, to in front of a drug store, where they would feel safer waiting for their bus. Linda was also listed by the principal of Ottawa’s St. Anthony’s School at its 100-year celebration as one of the people who made a difference for St. Anthony School, 15 years after she worked at the school as a Community Developer. Linda has also interviewed Canadians across Canada who are homeless, living on the streets or living in overcrowded and unsafe conditions, and she has used their stories and insights to further policy development, research, and evaluation in the federal government.

Anna Samson
Twitter: @chronicallyillx

Anna Samson (they/she) is a desi, queer, disabled person living just outside of Toronto, Canada. They are a writer and poet studying English at McMaster University and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, and more. They have experienced symptoms since they were 15/16 years old and now permanently use a cane and frequently use a walker to ambulate. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, and mental health.

They are an ambassador for Healp.co and Take A Pain Check where they raise awareness for chronic illnesses and disabilities and create content about living with rheumatic diseases. They are also a contributing writer for Health Union where they write articles informed by their lived experience for axialspondyloarthritis.net, chronicdryeye.net, and insomnia.sleep-disorders.net.

You can find more of their advocacy work on Instagram and TikTok @chronicallyillxo

Dawn Richards, PhD
Consultant, IMHA Patient Engagement in Research Strategy
Twitter: @TO_dpr

Dawn Richards, PhD, is the founder of Five02 Labs Inc. Her firm provides traditional services including project management and preparation of grants, manuscripts, corporate and lay language materials; along with those to incorporate the patient perspective and through the development of relationships with patients and patient organizations. Clients are from all sectors. With a PhD (Analytical Chemistry) from the University of Alberta, Dawn has worked in a variety of roles during the past 20 years, however her diagnosis with rheumatoid arthritis almost 15 years ago instigated a journey to intertwine her passion for science with making the most of her diagnosis.

As a patient advocate and volunteer, Dawn is Vice President of the Canadian Arthritis Patient Alliance and a member of The BMJ's Patient Panel. She served as an IMHA Research Ambassador from 2014 - 2019 and was the first Patient Advisor of the Canadian Medical Association's Wait Time Alliance. Dawn advocates for arthritis awareness, access to treatment, the importance of research and the inclusion of patients both in decision-making and as research collaborators.

Joan Rush

Joan completed her Master of Laws degree at the University of British Columbia, focusing on Health Law and Ethics. She is currently Chair of the Advocacy Committee for the Canadian Society of Disability and Oral Health. Prior to establishing a private practice, Joan was General Counsel and Vice President Law for a Canadian life and health insurer that operated internationally. She is a former adjunct professor in both the Law and Dentistry Faculties at the University of British Columbia. Joan received the 2020 Merit Award from the Canadian Association for Public Health Dentistry in recognition of her advocacy on behalf of Canadians with disabilities who cannot access essential oral health care because of affordability, accessibility, or availability of dental treatment.

Eileen Davidson
Twitter: @chroniceileen

Eileen Davidson is a rheumatoid arthritis patient advocate and blogger from Vancouver BC. She is a regular writer for Creaky Joints, an ambassador with The Arthritis Society and patient advisory board member (APAB) with Arthritis Research Canada. Healthline, Everyday Health and Health Central have called her blog and social media channels one of the best in the arthritis community. When she is not advocating or writing about arthritis she is focusing on exercise, painting and her young son Jacob. Her mission is to promote a better tomorrow for those living with arthritis and her involvement in research plays a key role in that.

Trudy Flynn
Twitter: @trudyflynn_

Trudy Flynn is a retired Nurse from Nova Scotia. She was diagnosed with Fibromyalgia over 25 years ago. She controls her Fibromyalgia with exercise, is a long distance runner and follows the slow but steady mantra. Trudy was part of a Clinical Trial in 2009 through the Nova Scotia Pain Clinic. Her first experience with Patient Engagement was in 2014 as part of the steering committee for the CIHR - James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. Trudy was a Patient Representative at the Canadian Pain Summit in Toronto in September, 2014, where she realized that Knowledge Translation and Patient Engagement were issues she was very interested in pursuing.

In October 2014, Trudy also became a Research Ambassador for CIHR – IMHA. In 2017, Trudy coauthored a paper published in the Canadian Journal of Pain, called "A paradigm change to inform Fibromyalgia research priorities by engaging patients and health care professions". In 2018 Trudy wrote about her James Lind experience in an article titled "The James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia - a Patients Perspective" for the CIHR website. In 2019 Trudy was a key contributor for the IMHA Online Resource Library: Fibromyalgia section to enable people with Fibromyalgia, Researchers and Clinicians to have a portal to important information on this condition. In 2019 Trudy joined the Maritime SPOR Support Unit (MSSU) to help promote and participate in Patient Engagement in the Maritime Provinces. Trudy is currently on the Wait List for the PaCER (Patient and Community Engagement Research) program at the University of Calgary. Trudy is very excited to be part of the new CIHR – IMHA Patient Engagement Research Ambassadors.

Allan Stordy
Twitter: @AreteHRAllan

Allan Stordy, President & CEO of Arete® HR Inc., is a recognized leader and innovator in the employee and business assistance program industry. His commitment to excellence and strong belief that the workplace should not be the cause of employee health or performance issues, led him to found his respected company in 2009. Under his leadership, Arete improves the well-being of Canadians by proving excellent bilingual assistance services to businesses, associations, organizations, individuals, and families across Canada.

Allan's interest in total health and advocacy for health research began when he developed a chronic disease that severely impacted his life. He is a founding Board Member and past Chair of the Canadian Skin Patient Alliance (CSPA), served on the Institute Advisory Board of CIHR-IMHA (2007-2014), is a past member of IMHA's Research Ambassadors, is a past member of the advisory council to Alberta's SPOR Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit Platform, and served on CIHR's Patient Engagement Committee (2018) Gold Leaf Prize for Transformation. Currently Allan is a Board Member for the AARC Adolescent Recovery Centre, on the CIHR Citizen Advisory Committee and the National Steering Committee for the Strategy for Patient Oriented Research, and a member of the Canadian Standards Association – Technical Committee CSA Z1008 Management of Substance Related Impairment in the Workplace.

Gillian Newman
Twitter: @gnewms19

Gillian Newman is currently completing her Masters of Social Work following her recent graduation from the University of Guelph with a BA in History.

Gillian is an involved member of the scoliosis community, having been diagnosed with scoliosis at age 12. More recently, she has attained a position as a Board Member of Curvy Girls, a non-profit organization dedicated to providing support to those suffering from scoliosis around the world. As a Board Member, Gillian has helped establish various initiatives, including a peer mentorship program that provides ongoing guidance for both Curvy Girls members and chapter leaders. Gillian has made it her mission to raise awareness about the emotional and physical impact of scoliosis on those diagnosed with the condition within the medical and lay communities.

Gillian previously served for nearly three years as an IMHA Research Ambassador, and is now thrilled, as a health care advocate, to be taking on a new IMHA role as a Patient Engagement Research Ambassador. She looks forward to continuing her advocacy and awareness work with different communities to foster and promote patient engagement and to help tell the stories of health care users who are changing the way society treats and understands musculoskeletal health and arthritis.

Christine Thomas
Twitter: @AskChristineT

Crack! Christine Thomas was only 42 when, bending to lift her newborn daughter, she fractured her spine. She had no idea of the painful and transformative road she would have to travel to build stronger bones and reclaim her life from the clutches of osteoporosis.

Christine is a nationally recognized author and speaker in Canada. Having been a senior negotiator in the Canadian Government and having studied at the universities of Carleton (Honours Bachelor of Commerce), Queen's (Executive MBA) and Harvard (Program on Negotiation), Christine has honed her communication skills. As the author of Unbreakable: A Woman's Triumph Over Osteoporosis, she has won numerous awards (Eleanor Mills Inspiration & Back Bone awards as well as a nomination for a Woman of Distinction award) and is often seen in the Canadian media delivering her messages with the kind of conviction learned only through hard experience.

Christine has been a volunteer with Osteoporosis Canada (OC) and a passionate advocate for better bone health care in Canada for those at risk of breaking a bone from the disease. Her lived experience has been at the core of the roles she has played, some of which include: Chair of the former Ottawa Chapter for OC; advocating to politicians to support the Ontario Strategy for bone health; executive on the Canadian Osteoporosis Patient Network; and member of the board of directors of OC. Since 2018 she has been a patient representative on the Pharmacotherapy & Knowledge Translation Working Groups updating the Clinical Practice Guidelines for the Diagnosis and Management of Osteoporosis. Christine has learned so much from her experience. She believes that if you truly want to improve osteoporosis outcomes and produce the best guidelines for this condition, you really need a combination of evidence, risks, benefits & the patient perspective!

Linda Hunter
Twitter: @lhunter1310

Linda Hunter is a semi-retired nurse and has lived with chronic pain for over 8 years. She has been diagnosed with spinal stenosis, osteoarthritis, and severe degenerative disc disease. Her journey to diagnosis and treatment options was interesting and challenging - some options helped, some did not. Linda had a double spinal fusion with disc replacement and bone grafting one year ago. She has regained mobility and has been able to resume more activities that allow her to have an enhanced quality of life. "I think it is vital that the patient voice is respected, listened to, and incorporated into change in the delivery of health care services, including research. Patients are experts about their disease and the lived experience. They are becoming more informed and knowledgeable, and it is imperative that they are included in the development of plans of what is researched."

As a nurse, Linda has provided empathetic and compassionate care to patients at vulnerable points in their lives. Through her graduate education, she understands research and appreciates how important – yet how difficult it can be – to sustain the research required for creating change. Her professional life as a clinician, an educator and an administrator, combined with her experiences as a patient, have allowed her to grow, to become more introspective, and to realize that she has experiences that can help others in similar situations. "I have come to realize that kindness and a smile are free and allow patients to feel much better. Trust in healthcare staff by patients needs to be gained. Listening skills are paramount to understanding the patient perspective. I want to help shape the research that will be vital to providing better treatments, support and partnerships with patients living with these diseases."

Legacy IMHA Research Ambassador Members

• Debbie Feldman, Professor, University of Montréal, Past Co-chair
• Pam Sherwin, Founder, Children's Arthritis Foundation, Past Co-chair
• Sabrina Poirier, Consumer
• Larry Funnell, Canadian Osteoporosis Patients Network
• Richard Hovey, Consumer
• Brigitte Lagasse, Consumer
• Anne Lyddiatt, Patient Partners in Arthritis
• Claudia Maltais, Consumer
• Ted McNicol, Canadian Arthritis Patient Alliance
• Jonn Ord, Canadian Dupuytren Society
• Graeme Reed, Consumer
• Dawn Richards, Founder Five02 Labs Inc
• Anna Pileggi, AboutFace
• Erna Snelgrove-Clarke, Past Chair
• Flora Dell, Past Chair
• Barbara Grimster, Lupus Canada
• Blair Boudreau, Seniors Oral Health, NS
• Diane Ladouceur, Active Living Alliance for Canadians with a Disability
• Ina Ilse, Osteoporosis Canada
• Leanne Hall, UBC Skin Care Centre
• Linda Li, Canadian Physiotherapy Association
• Maria Judd, Canadian Health Services Research Foundation
• Mary Brachaniec, Canadian Arthritis Patient Alliance
• Nadia Prestley, Arthritis Research Centre of Canada
• Natalia da Costa, Consumer
• Nicola Birchall, Canadian Paraplegic Association, Alberta Division
• Otto Kamensek, Arthritis Research Centre, BC
• Phil Hughes, Seniors Oral Health, NS
• Priscilla Cole, Osteoporosis Canada
• Regina Willmann, Public/Canadian Chiropractic Association
• Rosanne M. Kyle, Consumer
• Shirley Hundvik, Canadian Osteoporosis Patient Network

Date modified:

2025-10-09