Midland, Kings County, New Brunswick
Linda Wilhelm is the President of The Canadian Arthritis Patient Alliance, a virtual, grass-roots, patient-driven, independent, national organization with members across Canada. She is on the operations committee of the Best Medicines Coalition, frequently participates in Health Canada expert advisory panels and conferences concerning access and drug safety issues. She is a former member of The Expert Advisory Committee for Vigilance of Health Products and a current member of the CIHR’s Drug Safety and Effectiveness Network’s steering committee. Linda has been an active advocate for treatment access and quality of care for all patients both regionally and nationally for over ten years, is a past board chair for the New Brunswick Division of the Arthritis Society, as well as a past Board Member of The Atlantic Health Sciences Corporation. Linda has been living with Rheumatoid Arthritis for over twenty five years. She and husband Kerry have been married for over thirty years, have three grown children, three grandsons, and live in Midland, Kings County, New Brunswick.
Dawn Richards, PhD, lives with rheumatoid arthritis and osteoarthritis, and is the volunteer Vice President of the Canadian Arthritis Patient Alliance. She advocates for arthritis awareness, access to treatment, the inclusion of patients in decision-making and as research collaborators, and the importance of research. She seeks to ensure the patient voice and perspective are represented and heard in the arthritis community.
Professionally, Dawn is a consultant. With her PhD in Analytical Chemistry from the University of Alberta, she has spent the past 20 years in various roles, as a: bench scientist, project and operations manager, technology transfer and commercialization manager, and business development officer. Her consulting services include project management and grant and manuscript writing; along with those to incorporate the patient perspective. In the past 2 years, her consulting firm has received an honorarium from Lilly for sharing information about her own experiences with arthritis and about CAPA.
Twitter handle: @TO_dpr
Laurie Proulx has lived with Juvenile Rheumatoid Arthritis for over 25 years and it is her experiences that led her to the Canadian Arthritis Patient Alliance (CAPA) where she advocates for increased arthritis awareness and the adoption of more inclusive, patient-centred policies and practices. She is currently a Board Member and 2nd Vice-President with CAPA and has been actively involved in the organization for over 10 years. In this role, she represents the patient voice on various health policy issues, leads projects to support people with arthritis navigate pregnancy and parenting, and support their participation in the workplace. She also works extensively as a patient partner in research. Laurie lives in Ottawa with her husband and two children.
Twitter handle – @ProulxLaurie
Louse is a proud Metis of Cree heritage who uses the teachings of her Elders in her teaching style. She came to us with a background of nursing and medical office assistant work and then decided to return to school. Louise studied anthropology/history and graduated from the University of Calgary in Heritage Resource Management. After spending several years managing heritage sites in northern Alberta, she returned to Calgary and “fell” into support work. She spent the next 25 years working as a community developer and support worker with organizations such as the Alex and Northeast Community Resource Centers. After working as a support worker at Mamahawi – Atoskiwin, she tried to retire but found she need more. In July 2019 she joined Bay River college as an instructor for the Family support worker certificate. That job ended one year later due to Covid closing the classes. She is now retired and sits on the City of Calgary Transit Board. Her former board work has included various University of Calgary health initiatives in Siksika and Awo Taan Native Women’s Shelter.
Janet was diagnosed with vasculitis 20 years ago. Since 2002 Janet has been an active volunteer with The Arthritis Society provincially and eventually became a volunteer with the national office by becoming a consumer reviewer with several grant competitions. She is a member of CIHR’s Drug Safety and Effectiveness Network. Janet is a member of the SPOR Chronic Pain Network as well as The Saskatchewan Centre for Patient Oriented Research Patient and Family Advisory Council. She is also a volunteer with The Cochrane Collaboration.
Los Angeles, California
Michael Kulava has been living with rheumatoid arthritis for over 10 years and started advocating for the arthritis community in 2016. While spending half of his time in Canada, Michael has explored the arthritis community to find his place at CAPA. Michael strives to be the voice of arthritis patients through his advocacy work and also through his fashion designs.
Since starting his advocacy, Michael has been the spokesperson for non profit group CreakyJoints and has produced 5 New York Fashion Week runway shows which has brought awareness to all areas of arthritis. Michael is also a know professional figure skater and coach, which he loves to pursue on the side. Michael has a design degree from the Fashion Institute of Design and Merchandising in Los Angeles, CA and he enjoys spending his down time with family, friends and his dog.
Annette McKinnon has had Rheumatoid Arthritis for over 30 years and has seen many improvements in the way RA is treated. A background in market research left her prepared for an active involved retirement centering on social media and health care. Starting with blogging and going on to Twitter and Tweetchats have revealed new worlds of support.
She tweets for the Sjogren’s Society of Canada where she has been a board member for 10 years, and she served as a Public Member of the Council of the College of Occupational Therapists for the past three years. In 2014 she was an ePatient Scholar at Stanford’s MedicineX Conference in Palo Alto; she is proud to be a member of The Walking Gallery. She is a Health Mentor for the Centre for Inter-Professional Education of the University of Toronto, and a co-author and patient partner on research projects.
In an age where patient engagement is increasing she advocates for the patient voice to be included in health care decision making at all levels.
Therese is a former Nurse, who has had Arthritis, and Fibromyalgia for 25 yrs. Therese is on the Patient Engagement Committee of the SPOR Chronic Pain Network, the Steering Committee of Action Ontario PNP, and an Advisory Board Member of a Downtown Toronto Clinic Out- Patient program of CAMH for People with Complex Mental Illness. Therese is also on the Online Consumer Panel of the Arthritis Society. Since developing Chronic Illness Therese has found relief and motivation from regular exercise and is a devoted member of the YMCA, and an advocate of many of the Arthritis Programs supported by the Y.
Therese is a member of Women Speak Out, advocating for the homeless and underhoused population of Toronto. Therese is also a Chef, Paralegal and Baker, and a humble member of CAPA.
Nathalie has been living with rheumatoid arthritis since 2003. Due to the aggressive nature of the disease, Nathalie needed to make a number of life changes, including getting to know and manage her strengths. After going through this journey, she felt it was important to help others do the same, and became a volunteer with The Arthritis Society providing training as part of the Arthritis Self-Management Program and the Chronic Pain Management program. Nathalie joined CAPA in 2015 to continue to support others who have arthritis.
She holds a Bachelor of Commerce degree from Concordia University, and a Masters of Business Administration from the University of Ottawa. Nathalie works full-time, and enjoys spending time with her loving husband and beautiful son.
Alex first developed JIA at the age 7. It took 3 years, and a referral to Sick Kids in Toronto, before she was properly diagnosed. Living with JIA has shaped how she views health care, as she gains a fuller understanding of the enormous gaps that I and others with inflammatory arthritis (IA) face, the stigma of living with IA, and the limited information on how to live a full, meaningful life. This drives Alex to help change the face of arthritis and improve the quality of life of individuals with IA. Alex has seen firsthand that the more she gives to the arthritis community, the easier it was to accept and embrace who she is and thrive.
Alex completed a Bachelor of Health Promotion at Laurentian University and a Master of Science in Exercise Physiology at McGill University. In her spare time, Alex enjoys cheerleading, hiking and trying new desserts.
Emily Sirotich is a current PhD student in Health Research Methodology at McMaster University. She was diagnosed with Juvenile Idiopathic Arthritis at the age of 13, right before entering high school. She has been managing her arthritis and all that comes with it for over 11 years. This experience inspired her love of medicine and research. She completed a BSc at the University of Toronto, specializing in Health Studies, Immunology and Human biology. She began a Diploma in Clinical Epidemiology at McMaster University in 2017. Her success in the Diploma program recommended her for the MSc program and later the PhD program.
She began her PhD journey in September 2019. It was through engagement with patients during her PhD project that allowed her to realize the unique opportunity to combine her patient experience with her knowledge of health research. Emily advocates for patients with arthritis and engages with health research in various ways (studies, policy, etc.). When she is not working towards her PhD, she loves to swim, bike, and cook with the family!