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 has been a member of the APAB team since 2013. Living with rheumatoid arthritis and autoimmune gastroparesis, she is a physical therapist and works is a Knowledge Broker for the UBC Department of Physical Therapy, Physiotherapy Association of BC and Vancouver Coastal Health Research Institute. Additionally, she is the Physiotherapy Research, Education and Practice Coordinator for Providence Health Care and a Research Associate of the Centre for Health Evaluation and Outcome Science. Alison is passionate about knowledge translation and patient engagement in healthcare research.
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 from 2013 to the present has been 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 founding member of the Patient Advisors Network, a community of practice for patients. 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 member of APAB from Ontario she is honoured to be a member of the Arthritis Patient Advisory Board and to work with such a well qualified and effective group of volunteer advocates.
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.
Karen’s 15-year experience with non-radiographic axial spondylitis (the non-fusing 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 to become an arthritis physical therapist. In 2015, she became the first formally trained rheumatology and orthopedics advanced practice physiotherapist in B.C. and has been fortunate to have been involved in arthritis care in B.C. on many levels; from research, clinical practice, and teaching, to lending her patient voice to projects. She is excited to be able to contribute her knowledge and patient experience to support the research at 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.
Kelly has been a member of the Arthritis Patient Advisory Board since 2013 and a co-chair since 2017. Belonging to Arthritis Research Canada’s Patient Board has improved her quality of life by giving her a chance to help shape research. The researchers have welcomed her as a participant in research but also as a patient-partner in research. Kelly has participated in focus groups for medication adherence, exercise motivation with a Fitbit and with limited coaching from a physio, walked 10 blocks a day and tested a health journal, as well as others.
As a patient-partner, Kelly has participated on a team composed of a scientist, a trainee and several patients to develop a framework for Patient Engagement in Research which can be used by many disease groups – not just arthritis. She is on several other projects as a team member as well.
With the support of her fellow board members, she has attended rheumatology conferences, written newsletter articles, learned to tweet and had numerous speaking engagements. One recent experience was with Sheila Kerr on a webinar “Patient’s Experiences of Engaging in Research,” found here: https://www.msfhr.org/ktconnects#Dance
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.
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 twenty five 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 instead of her 60’s, as she too believed that arthritis was a disease of the elderly.
Her background is sports injury prevention, volunteer management and sporting events management. She has been involved with the Commonwealth Games in Victoria, the World Figure Skating Championships in Vancouver, Vancouver 2010 Winter Olympics and sport teams, especially rugby from mini, youth, club, to old boys & representative rugby with BC & Canada. You will find her on a rugby pitch most weekends either as a trainer or a rugby Mum!
Trish has been involved in the arthritis community for over 25 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. Arthritis research is key to learning new ways of managing arthritis, understanding the impact and importance of physical activity on arthritis and taking control of arthritis in the workplace. Being involved in these research projects have changed her life with arthritis by empowering her in her daily life and she hopes others will benefit too; Trish recently participated in a pilot project – read more about it here: https://www.vchri.ca/not-just-disease-elderly. She shares 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.
Inspired by her rheumatologists, Karina joined the Arthritis Research Canada Patient Advisory Board team in 2017. She has lived with lupus for 13 years and, for the most part, thrives despite the boundaries and limitations it imposes on her life. There are many challenges that have dogged Karina as a lupus patient, but she celebrates having beaten them all so far. Being involved in research and learning new things through her experience on APAB has been an enriching opportunity. Karina values the education she is getting and strives to share it with others! When she is not working on her APAB activities, you will find her busy in her art studio; Karina is an oil painter by profession. To see her art, please visit her website at: ksvalya.com.