We are pleased to welcome and announce that we have recruited nine patient partners to the introductory training program and thirteen patient partners to the intermediate / advanced training program. We launched these training programs during the summer of 2023 with the goal of better supporting and matching patient partners, or people with lived experience of research, to research and other projects. This latest effort is supported by the Office for Patient Engagement in Research Activities (OPERA) at the Ottawa Hospital Research Institute. 

Below you will find a brief biography and picture of each of the participants – we look forward to supporting them in learning more about research and increasing the impact of patient partners on arthritis related health research projects.

Amanda Swartz

Hello my name is Amanda Swartz and I have been living with RA for most of my life.

I was diagnosed around the age of 11 and have had RA impact every aspect of my life since then. I love to volunteer and support others living with RA (and other forms of arthritis) to help create a greater understanding of chronic illness.  I also like to help with research projects and being a patient partner.  In my free time I like to travel, read, go to concerts and create art.

Anna Samson

Anna Samson (they/she) is a desi, queer, disabled person living near Toronto, Canada. They are a writer, poet, and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, and more. They have experienced symptoms since they were a child but it worsened during their teens. Anna now uses a cane full time and frequently uses a walker. They have a Bachelor of Arts in English and use their writing and communication skills to create content about their conditions and how it affects their life. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, and mental health, along with patient engagement in research. You can follow them on social media @DisabilityWithAnna

Clare Hildebrandt

Clare is a health care leader with more than 25 years of experience, working across the following sectors and populations, including homecare, dementia care, women’s health, indigenous populations, not-for-profit, population and public health, pediatrics, acute care, and long-term care.  Throughout her career, Clare has been a champion for person and family centered care and promotes engagement in all aspects of care from the bedside to the boardroom.  She believes that all areas of the system of care must work together to transform services. She is a member of the Alberta Arthritis Research Community Network as a parent representative as her son lives with Arthritis.  Using her Masters in Epidemiology, her personal mission is to leverage data and systems to optimize patient care and experience.

Debbie Paleczny

My name is Debbie Paleczny. I live in Kitchener Ontario.  I work part-time in a Retirement home. I love to volunteer and have basically done so in 1 form or another since I was a kid. I live with Rheumatoid arthritis and Fibromyalgia.  It affects my day to day living through mobility issues and pain management issues.  I also have been receiving help from the arthritis society for over 5 years which is why I am so happy to give back with volunteering with them and helping with research in any capacity to help others struggling like I do.

Gisele Lamoureux

My name is Gisele Lamoureux. I have had rheumatoid arthritis for five years, and osteoarthritis for twenty-three years. I had two knee replacements eight and nine years ago. These operations led to my retirement, because they were successful in eliminating pain, but neither knee bends normally. The rheumatoid condition seems to be well-controlled with the medications that my rheumatologist prescribes. I have enjoyed participating in CAPA’s patient-partner opportunities and am eager to learn more.

Jillian Banfield

Jillian Banfield was diagnosed with Juvenile Rheumatoid Arthritis in 1985 at 14 months old. She has lived with the many physical and psychosocial impacts of inflammatory arthritis her whole life. Jillian earned a PhD in Social Psychology and then transitioned into healthcare research. She had some poor experiences as a patient partner when it was an emerging practice in Canada. Determined to use her experiences to improve the practice for other patient partners, she was fortunate to have the opportunity to develop an approach to patient partnership for the Department of Anesthesia, Pain Management & Perioperative Medicine at Dalhousie University. Jillian is currently the Lead for Patient Partnership at the Institute of Genetics.

Jillian also advocates for inclusive access to active transportation options. Her bike has allowed her to keep cycling for transportation and connect with her community. Jillian shares her experiences as a disabled cyclist to challenge assumptions about disability and about cycling.

Linda Lou Roy

One word to describe me is resilience and the ability to change things for all those who cannot be their own voice.  My diagnosis of Rheumatoid Arthritis in 1994, I always had hope and am very persistent in learning about what are the best things for me and how others see me. My husband and I lived in Ontario for most of our lives together and 10 years ago we relocated to New Brunswick where we could enjoy our lives here in a quiet community near the Bay of Chaleur.  We both live with compromised immune systems, hubby with Diabetes and me with Rheumatoid Arthritis, we found our medical community easily due to self-advocacy and managed to get the necessary and informative medical care that we needed, navigating the medical community in a new province was challenging but now it works like a charm.

Over the past couple of years, I found myself with a need to be able to give back and started following different groups online and on Facebook, and came across CAPA, and through CAPA I re-established some communications with The Arthritis Society, patient partner groups, along with a provincial advocacy group NBCPD (New Brunswick Coalition for Persons with Disabilities). At the same time accessible buildings both medical and retail,  it is a big challenge for persons who use mobility aids and housing that can accommodate all ages of persons with disabilities,  this is my main focus provincially at this time,  not only for our families but all who need to be safe in their homes and are able to get around in the community just like the rest of the residents who live here.

Lucy Kovalova-Woods

Strategist, Fractional CMO, Startup advisor, and published author – all entrepreneurial experience and ambition have changed since I got my diagnosis. The change led to the social enterprise idea, which I’m working on right now. Would love to connect to like-minded individuals and learn from the CAPA patient partner program and participants. More about me: jimandlucywoods.com & wkgstrategy.com.

Nadine Lalonde

Nadine Lalonde is a person with lived experience (PWLE) in rheumatology. As a PWLE, Ms. Lalonde has engaged in research at various stages of the research cycle, reviewed grant proposals and written plain language summaries for research. Nadine is a partner with the Canadian Arthritis Patient Alliance (CAPA), Arthritis Research Canada (ARC) and the Patient Advisors Network (PAN). Ms. Lalonde has taken patient/caregiver engagement training with the Canadian Institutes of Health Research (CIHR) – Institute of Musculoskeletal Health and Arthritis and the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. Nadine is driven by furthering awareness of patient engagement as a movement and industry. She endeavours to assist with research and disseminate research results to all the stakeholders, including patients and patient caregivers, family, and friends. She hopes to help enhance general awareness of rheumatic and other autoimmune diseases, and mental health wellness.

Natalie Boivin

My name is Natalie Boivin and I live in Ottawa.  Seven years ago, I was diagnosed with a rare disease while living and working as a prosecutor in Sudbury.  This diagnosis changed my life.  It involved treatment by a multidisciplinary team which was not available in my hometown.  Having moved to Ottawa 5 years ago now, I am lucky to get wonderful care at the Ottawa hospital. Two years ago, I became a patient advisor for this same hospital.  My passion for advocacy, volunteer experience on various boards (women at risk, healthcare and arts) and a new found passion for medical research, have led me to becoming a patient partner through CAPA.

I look forward to working with other patient partners and other stakeholders involved in medical research.

Sue MacDougall

My name is Sue MacDougall, I am 49 and live in Hamilton, Ontario with my husband and our two teen boys. Several years after the birth of my youngest I was diagnosed with moderate Psoriatic Arthritis; I was quickly placed on Biologics and have since been functioning quite well. I have been working at Hamilton Health Sciences in the Acquired Brain Injury for over 21 years. This job is very rewarding, oftentimes our patients don’t know where to turn or know what services are available to them, so we guide them. I try not to worry about this disease and how it may affect my future. I lost my Mom just after her 70th birthday to complications of Multiple Sclerosis. There have been so many advancements in research and medication for autoimmune diseases over the past couple decades, but more work needs to be done. My hope is to take my personal experience, and knowledge of the healthcare system to bring about positive change and hope for future patients of Psoriatic Arthritis and autoimmune diseases.

Karen Demassi

Hi, my name is Karen Demassi. I live in Calgary with my husband and two wonderful adult children and two energetic grandsons. I have recently retired from a rewarding career in education. My career began as a teacher, then transitioned to school administrator and ended as director of Human Resources for a large school board. In addition to my paid work, I have volunteered for a variety of organizations. Most recently, I was a facilitator for the Calgary Immigrant Women Association, a board member for the National Osteoporosis Board of Canada

and a facilitator and panel member for Arthritis Canada. My educational background consists of a master’s degree in Education- specializing in organization development and certifications in Executive Coaching, Human Resources and International Public Participation. I have a curiosity about health and healthcare. I have osteoarthritis and have recently had successful bilateral knee replacement surgery. My family members also have arthritis such as: rheumatoid arthritis, osteoarthritis and gout. As a patient I have experienced a variety of aspects of our health care system. My professional, volunteer and family experiences will further add to my contribution as a patient advocate and my perspective on research and policy development.

 Hugh Connelly

I am a retired lawyer whose field of practice included labour relations, grievance arbitrations, policy drafting and human resources in a unionized workplace. I am still drafting policy as a consultant for one of my School Board clients. In addition, I am designing and delivering interactive case study based professional learning programs. As a patient advisor for the Ottawa Hospital, I have participated in focus groups, given feedback on proposed patient information and served as a member of a job interview selection panel for patient and family engagement staff. My patient experience includes interacting with a urologist about my bladder cancer, an eleven hour surgery to replace my bladder with a neo bladder and a ten day recovery in hospital. I have drafted a patient information sheet for bladder cancer patients which provided information from a patient rather than a medical or hospital perspective. I have an interest in research and my background includes several courses in research methods and statistics at the graduate and undergraduate level. While I was a student at the University of Toronto, I worked as a research assistant on the Canadian Illness Project, a Nova Scotia genealogical study and other research projects. My responsibilities included data input, coding and data analysis using SPSS on an IBM 7094 computer.

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