Arthritis Patient Advisory Board
Alexandria was diagnosed with Ankylosing Spondylitis in August of 2014 and promptly joined the Arthritis Patient Advisory Board in 2015. Alexandria was initially an Arthritis Research Canada trainee when she first was directed to a rheumatologist at ARC due to demonstrating symptoms. Thanks to the team environment at ARC she was diagnosed a lot quicker after the onset of symptoms than most Ankylosing Spondylitis patients. While adjusting to a new diagnosis Alexandria volunteered with APAB and continued pursuing her Masters degree. After a lot of support from the APAB team, Alexandria decided to change the direction of her education and career goals to pursue a Master of Management at UBC. She currently holds a Kinesiology degree from UBC and plans to use her experiences gained with APAB and ARC along with the to be completed Master of Management to improve the low employment rate of those with disabilities. Alexandria currently writes regularly for the Arthritis Newsletter and is an active APAB representative for the nation-wide organization Arthritis Alliance Canada.
Alison is new to the APAB team having recently been diagnosed with rheumatoid arthritis. She is a the Physical Therapy Knowledge Broker (UBC Department of Physical Therapy, Physiotherapy Association of BC and the research institutes of Vancouver Coastal Health and Providence Healthcare) and a Physiotherapy Research, Education and Practice Coordinator (Providence Healthcare).
Her interests and experience focus on knowledge translation, evidence-informed practice support, and safe /effective use of electrophysical agents (e.g. TENS, Ultrasound, LASER).
Annette is an enthusiastic advocate for patient inclusion in research and in healthcare decision making. She has had rheumatoid arthritis for the past 30 years and was a partner in a market research fieldwork company until retirement. In 2014 she was an ePatient Scholar at the Stanford Medicine X Conference in Palo Alto, and in 2013 and 2014 was the moderator of the Reaching Out With Arthritis Research (#eROAR) tweetchat.
Annette sits on the Board of Directors for the Sjogren’s Society of Canada and tweets at @Sjogrensca for the SJSC. She also is a volunteer Health Mentor for the Centre For Interprofessional Education in Ontario and is a member of Patient Partners in Arthritis and CAPA. You can often find her participating in tweetchats as @anetto or blogging about health related issues at her blog called “Your Gold Watch – Rheutired”
As a new member of APAB from Ontario she is honoured to be invited to join the Arthritis Patient Advisory Board and to work with such a well qualified and effective group of volunteer advocates.
Jasmina is a Research Coordinator to Dr. Linda Li at the Arthritis Research Canada. She earned an MSc in Health Care and Epidemiology from UBC, and is currently coordinating the ICON and ANSWER-2 projects. Her experience in health behaviour and chronic disease management research has led to an immense appreciation for patient engagement throughout the research design phase and ongoing knowledge translation efforts. She is very honoured to join APAB as an Associate Member.
A retired Economic Geologist, Jon has been dealing with psoriatic arthritis for some time. Living with this disease makes him very interested in finding out more about arthritis in general. When the opportunity to join the Arthritis Patient Advisory Board came up, he immediately signed on.
Jon believes the Arthritis Patient Advisory Board of Arthritis Research Canada is the ideal organization to help him get involved with many aspects of arthritis. It will allow him to pursue several of his parallel interests which include: (a) arthritis research and interaction with the wonderful scientists involved; (b) exercise regimens and physiotherapy as they pertain to lifestyles for arthritis patients; (c) appropriate knowledge exchange with other arthritis patients; (d) talking with his two sons who practice rheumatology and radiology in the Lower Mainland; (e) speaking with the general public about arthritis.
Joyce was diagnosed with Rheumatoid Arthritis in 1976 and polymyositis in 1981. Although she is in remission she remains vigilant about taking care of herself and learning about any new discoveries that help people with arthritis. Joyce is passionate about sharing this information and her experiences with newly diagnosed patients.
In 2009, Joyce joined the Arthritis Patient Advisory Board of Arthritis Research Canada. Joyce has also been a dedicated and active volunteer with other groups such as The Arthritis Society where she has helped in their various fund raising events since 1994.
As an active member of The Vancouver Community Group, Joyce volunteered to manage The Bluebird Shop and the marketing of the Mary Pack cards in the Learning Centre at the Mary Pack Building since 2004. Since joining APAB, her many contributions include patient representation in several arthritis research projects and studies, member of the ROAR (Reaching Out with Arthritis Research) steering committee, member of the APAB Newsletter Committee, a lay summary reviewer, and an active fundraising participant.
Karen’s 15 year experience with non-radiographic axial spondylitis (the female form of ankylosing spondylitis) and her experience with the typical delay to diagnosis (8-10years) inspired her to switch career paths midway through graduate school. Karen retrained to become a Pilates instructor, then became physiotherapist with a focus on treating other individuals with arthritis and chronic pain. With experience as a patient, clinician, and researcher, she is in a unique position to support the Arthritis Patient Advisory Board’s mission, and is excited to be able to contribute her knowledge and patient experience to support APAB and Arthritis Research Canada (ARC).
Katie was first diagnosed with a form of spondyloarthropathy at the age of 19 in Nova Scotia. Moving coast to coast to pursue a doctoral degree in archaeology, Katie has not let arthritis stand in her way of adventure! A strict diet, exercise program, and a wonderful support system have enabled her to live a relatively pain-free life for the past decade.
Katie is passionate about a holistic approach to the treatment and management of arthritis. Her academic background has enabled her to keep up-to-date with current arthritis research and she is eager to share this information with the public, especially young adults who are new to navigating the world of inflammatory arthritis.
Katie is very excited to join the APAB team and continue their innovative mission of including the patient perspective in arthritis research.
I come from a background of mom extraordinare, person living with RA for 19 years, and education of experience – only one year of actual college – special student assistant, accounting technician, as well as cat and dog sitter.
My best experience comes from volunteering. I was a speaker with the Arthritis Society in Victoria for several years and taught the Arthritis Self-Management Program for 3 years. A girl guide leader, as well as leader trainer, taught me organization and teaching skills as well as patience! My volunteering now is composed of bookkeeper for Textile Artists Guild of Richmond and the board of ARC.
I bring to ARC my ongoing interests in Social Media and in Research participation. My goal for the future is as always to spread news about Arthritis research and current non pharmacological and pharmacological treatments to as many people as possible. People living with any kind of arthritis need to know researchers are working not only towards a cure but also to treatments. ARC gives me ways to give them HOPE! Thank you for that.
Lianne has been an active member of the Arthritis Patient Advisory Board (APAB) since 2007, serving as co-chair since 2009. Lianne was involved with the BC Lupus Society for over 10 years, and joined APAB to represent and advocate for lupus, a low profile disease amongst the arthritis group.
The research process is key to understanding disease and the ability to have input, meet researchers, and generate feedback and ideas at the APAB level is very important.
To interact with such high profile researchers, keep abreast of current research and future direction, and have the opportunity to perhaps influence the research direction and application of all arthritis groups, particularly lupus, is very exciting.
The Research Liaison role with APAB is to be a link between the Patient Advisory Board and the research scientists at ARC. This includes making sure that APAB is aware of new research applications, successful grants and any other opportunities for APAB to play a role in giving input into research or disseminating information about research that is being done at ARC.
As Executive Assistant to ARC’s Scientific Director, and Research Secretary Patricia has first-hand knowledge of all the ongoing journal articles, conference abstracts and research awards involving ARC Investigators, putting her in a unique position to offer support to the Arthritis Patient Advisory Board as their Research Liaison.
Born and bred in BC, I have been learning about autoimmune disease for many years through my closest friend of 25 years who has Lupus. When I was diagnosed with Rheumatoid Arthritis in the fall of 2011, my GP told me that this was a field that was progressing rapidly with research and treatment, and it gave me hope from the beginning. My family was a huge support after diagnosis, attending appointments, searching for information, and helping me with the practical needs of daily living and emotional needs that come with the stresses and fears of a new diagnosis of an incurable disease.
Being diagnosed in the age of the internet can be a curse and a blessing, but mostly a blessing, which I discovered in the two months from my positive blood work until my first Rheumatologist appointment. I found social networking to be an amazing tool in finding support and in being guided to practical information as well as some very frightening information. I was ‘mentored’ by a wonderful woman whom I have never met, and I was fortunate to have had the greatest team of caregivers to go on my journey with me. I was prepared to fight for a good team, but I was blessed with the help of the great programs available to us here in BC. A lot of the information out in the cyber world can be very scary to navigate alone and I want to help others navigate through their journey using the tools available.
I am a reluctant blogger and offer support through social media and after attending my first ROAR event, eROAR2013, I was so very impressed that I offered my support and joined APAB to learn more about the great research being done, to spread the word, to give hope to others out there with these diseases, and to help others advocate for themselves.
Sharan was diagnosed with Lupus in December of 2009. A combination of great doctors, an effective treatment plan and a wonderful support system allowed Sharan to fight her disease into remission and live a relatively normal life as a twenty-something year old. Though she is still faced with the challenge of balancing some aspects of her disease (like fatigue), having lupus hasn’t stood in the way of her goals.
She recently completed a B.Sc. in Cell Biology & Genetics and plans to pursue medicine. APAB has been a tremendously wonderful way to get involved and make a difference, and it has led to her involvement in other areas of ARC as well. Sharan is currently heavily involved in the Social Media Committee and writes regularly for the Arthritis Newsletter, for which she also works with the editorial team to coordinate each issue. She is also the newest addition to the team of ARC Research Assistants, having recently started a position working with Dr. Choi. Apart from science, her interests include running, reading and writing.
Sheila’s interest is connecting the right evidence based health information to the right people at the right time. She believes that people should have access to quality health information and tools to assist them in making informed decisions (and taking actions) that can lead to optimal health. She is inspired by the dedicated, creative and innovative members of the Arthritis Patient Advisory Board (APAB) and the researchers who are all committed to improving the lives of those with arthritis.
Sheila worked for a decade as a physiotherapist, where she learned the importance of patient education and self-care to managing health issues in consultation with one’s health care team. She joined APAB in 2011 as a representative with osteoarthritis. As a member of APAB she is able to combine her personal understanding of osteoarthritis, her organizational skills, her experience in the health-care field, and her passion for engaging the public.
Trish was born and raised in British Columbia with stints in Alberta and France; she now calls both the Okanagan and the Lower Mainland home. With being a competitive athlete in badminton and skiing over the years, sports injuries were inevitable. Due to reconstructive knee surgery in the early 80’s, Trish has lived with osteoarthritis for over fifteen years. Although she was told that arthritis might occur subsequent to the surgery she was surprised when she started dealing with the arthritis pain, and stiffness in her 30’s not in her 60’s, as she too believed that arthritis was a disease of the elderly.
Her background is sports injury prevention and management in sporting events. She has been involved with the Commonwealth Games in Victoria, the World Figure Skating Championships in Vancouver, and sport teams, especially rugby. You will find her on a rugby pitch most weekends either as a trainer or a rugby Mom! Trish has been involved in the Arthritis community for over eight years as an educator, volunteer manager and event planner. Her focus is helping people living with arthritis learn about self-management and ways to live well with arthritis and dispel all the myths about arthritis! She has been involved with APAB’s ROAR education forum since 2007. She is looking forward to sharing her knowledge of osteoarthritis on a personal level, her organizational and leadership skills, her experience in the sport injury field, and her passion for helping people.
Wendy has always been interested in health and wellness having participated in various fitness activities over the years. She was a Wellness Committee member with the City of Richmond until she retired. Wendy was diagnosed with osteoarthritis five years ago. Being a new member with the Patient Advisory Board of ARC, she hopes to bring her personal health journey with osteoarthritis to help others. She is very encouraged by the valuable research that ARC is involved in and feels privileged to join the dedicated ARC team so that arthritis patients lead empowered and purpose-filled lives.