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

Athena LaCarte

I am interested in continuing my passion for learning more as I grow older and I end up putting more things in my bucket list! I became involved with Arthritis Society Canada in spring 2023 and as I learn more about this disease I want to learn more and become more involved with educating the public on how important exercise is when you are suffering every minute. I am interested in the Canadian Arthritis Patient Alliance for the work done to collaborate and research. I am excited to think I could be of some help groups to better understand arthritis with my own experiences and how I have learned to live with arthritis. In 1995 I had a snowmobile collision and after 2 surgeries and fusion, I ended up with arthritis. I was no longer competitive in slo-pitch and athletics due to my fusion and limping. Years later in 2014 I saw my family doctor in Orillia because I was having pain in my shoulder. I had fusion of my C7/T1 in May 2018 and felt relief instantly. After my recovery, I still had hand strength issues and I no longer could use my non-dominant hand to hold my firearm and was left no choice but to become the administration Sergeant and stay in the office.

I am a retired Sergeant with the Ontario Provincial Police. My career took me from Kirkland Lake to North Bay, Manitoulin Island, Orillia, Thunder Bay and back to Kirkland Lake where I finally retired in 2020. I was very fortunate in my career holding specialty positions from Abuse Issues Coordinator where I investigated child abuse, domestic violence and sexual assaults. I was a Scenes of Crimes Officer. I then became a member of the training unit for our Indigenous Policing Bureau where I attended summer camps for the far north First Nations children to have some fun in their own community. I was part of the police officer training where officers were taught residential schools, treaties, culture, and various teachings specific to Ontario and Canada. I was an analyst with our Intelligence Bureau and a witness protection officer. I had a great career and feel very fortunate that I can share many stories along my way. I wish to help others find exercises that help with keeping active. In 2023 I will be a supply teacher at both school boards in Kirkland Lake. I volunteer with the Legion. I help with our community litter clean-up.  I teach various fitness classes at our local community complex.

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. She is skilled with relationship building, recruiting, training, and with electronic administration skills. As a PWLE, Ms. Lalonde has engaged in research at various stages of the research cycle, reviewed grant proposals for research, participated on committees, recruited study collaborators, and written plain language summaries for research. Nadine began patient engagement on the Patient Board for the COVID-19 Global Rheumatology Alliance (C-19 GRA), a research group created by a handful of rheumatologists and patients during the pandemic. With the C-19 GRA, she worked with a network of researchers, clinicians, patients, and patient organizations worldwide. Nadine is a partner with the Canadian Arthritis Patient Alliance (CAPA), Arthritis Research Canada (ARC), where she is on the Arthritis Patient Advisory Board, 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, the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance, and she has completed the Family Engagement in Research program with CanChild and McMaster University.

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.

Nazret Russon

I am a first generation Black African Immigrant born in Eritrea, who loves to engage with the healthcare system to help achieve barrier-free, equitable, timely, quality health care for all communities in Alberta. I have a Bachelor’s degree in psychology from the University of Alberta. I am a full-time caregiver to a parent with complex health issue, such as Arthritis, Dementia, Diabetes, Cardiovascular and Chronic kidney disease. My family has a history of Arthritis and encounter barriers to accessing quality, timely quality care. I worked in the social fields and have been working in Health Care for the last 16 years and volunteering in it for 11 years. I am a health advisory council member with AHS and a member of patient and caregivers’ advisory councils and Black Advisory Council.

I am a patient partner in health research, in Equity Health Research, in, Kidney Health, in Arthritis, in Continuing care, in Senior Care, in caregiver-centered care education, and in Cancer Care I am a patient partner and a human rights advocate and an active member of several groups including: John Humphrey, Centre for Peace and Human Rights (JHC)1 Hea1th Excellence Canada, the Canadian Human, Rights Commission (CHRC’s)’s National Network of Stakeholders for Advanced Racial Equality, the Edmonton Coalition on Housing and Homelessness (1E1COHH), the Canadian Alliance to End Homelessness as well as an ally and member of Moms Stop The Harm (MSTH). I love going to the movies, and spending quality time with family. I love practicing gemstone therapy using my stunning therapeutic gemstone collection. I also enjoy speaking German, Italian, Spanish and Tigrinya whenever possible.

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 70^th 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.

Other patient partner participants:

Hugh Connelly