Arthritis Patient Advisory Board
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.
Facing a diagnosis of rheumatoid arthritis at the young age of 19, Nikki felt she had minimal understanding of the disease or support in dealing with it. No one in her family had arthritis, and being a first generation Canadian it was difficult to describe to her parents and grandma. In the early years after her diagnosis she almost felt ashamed disclosing her disease, hiding her symptoms at school and at work, knowing that many people have the common misconception that arthritis is meant for the elderly. Eventually, she began to embrace her disease and work to educate those who don’t know or understand it.
Nikki joined APAB in September 2019 hoping to advocate for those with the disease to advance research and provide the patient perspective. She looks forward to learning and participating in current and future research at Arthritis Research Canada.
On good and bad days Nikki finds support from her family dog Knight for his unconditional love. As most of us know dogs are great for therapy. When not working Nikki enjoys swimming, biking, skiing, and tennis. She loves the great outdoors and hiking, and is currently working on perfecting her golf swing.
Julia is an actress, dancer and writer in Vancouver B.C. She was diagnosed with RA at age 37 and couldn’t believe it could happen to her. Julia shares her journey living with RA through her blog The Old Lady in My Bones (https://theoldladyinmybones.com/). She is an international arthritis advocate who has contributed to health articles and websites worldwide, with features in Arthritis Digest UK, and Pain Free Living Magazine. She was a contributing writer to the book Real Life Diaries: Living with Rheumatic Disease. She has given talks on living with RA and was a panelist for RA Matters at Work, an event that brought patients and professionals together to talk about working and living with inflammatory arthritis. She had the pleasure of sharing her journey with Arthritis Research Canada in a patient video and is grateful for all the research being done to transform the lives of people living with arthritis.
RA has not stopped her from following her passions. She still gets on stage and was chosen as a first-round pick for the Writer’s Studio Program at Simon Fraser University. She is delighted to be part of the Arthritis Patient Advisory Board with Arthritis Research Canada, and hopes to continue her journey of words, encouraging people to live the best life they can in the face of disease. Just because there’s something you can no longer do, doesn’t mean there’s nothing you can do. (Photo credit: Janine Coney.)
Eileen Davidson always knew about arthritis. Her grandmother and aunt had it. But Eileen never really understood her grandmother’s need for double knee replacement surgery or her aunt’s true reason for her wheelchair until she was also diagnosed with rheumatoid arthritis (RA) at age 29.
Eileen had to stop working as an esthetician and, by the time her pain was taken seriously, she was eligible for long-term disability. Then she was diagnosed with osteoarthritis (OA). Arthritis took a toll on Eileen’s life. So she decided to fight this invisible enemy, not just for herself, but for her young son, Jacob.
Eileen is passionate about creating awareness about arthritis. In late 2016, she became an ambassador for The Arthritis Society and created her blog ‘chroniceileen.com’. She has been published in Reader’s Digest Canada and Inked Magazine, as well as on healthline.com and themighty.com. In addition, Everyday Health recognized her blog as one of the top ten arthritis blogs.
Patient advocacy has given Eileen a new outlook on life and keeps her moving forward. Her goal is to help those struggling with chronic illness to live better, healthier lives. Arthritis Research Canada plays a major role in that.
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
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 University of British Columbia’s 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.
Rosemary has lived with Rheumatoid Arthritis for the past 40 years and Myasthenia Gravis for 20 years. Even so, she will not settle for a bad day. Rosemary is a retired tourism consultant, hotelier and event planner. She is honoured to be a member of the Arthritis Patient Advisory Board (APAB). She joined the Board to further her interest in the latest arthritis research and to participate in research as a patient partner. Rosemary enjoys learning from arthritis research experts and her fellow arthritis patients and sharing her own personal experience. In addition to her work with APAB, Rosemary also helps raise awareness about arthritis and other musculoskeletal problems in Africa through media interviews and networking.
Sadiq was diagnosed with Juvenile Idiopathic Arthritis (JIA) at the age of six and has been living with the disease for 18+ years. The arthritis started in his neck and soon evolved to a systemic condition affecting multiple areas, causing joint stiffness, muscle weakness and chronic pain.
Sadiq has been a competitive golfer for 12 years. After captaining his high school golf team to its first provincial championship, he was recruited to play at Kenyon College, a private liberal arts school in Ohio. Throughout this time, Sadiq has constantly battled his arthritis through various medications, physiotherapy regimens, and other muscle/joint restorative therapies. Fortunately, through the help of his rheumatologist, parents, coaches, and physiotherapy group, he is able to manage his condition and continue chasing his dream of playing on the PGA Tour.
Sadiq joined the Arthritis Patient Advisory Board in 2019, after engaging in other volunteer roles in his community and school as an advocate to overcoming adversity and competing in sports at a professional level. Sadiq is excited to work with other members of the Board who are as interested in arthritis research as he is. He enjoys being involved in emerging research and providing a patient’s perspective to research topics.
Sadiq continues to do advocacy work with a variety of groups and is thankful that through a healthy lifestyle and with strong support, he has found an effective way of managing his arthritis. Sadiq looks forward to helping others do the same.
In 2011, Susan was diagnosed with lupus. She had no clue what the disease meant at the time. Since then, she has taken a natural curiosity towards her body and learned to support herself through healthy eating and lifestyle changes.
Susan teaches yoga to kids with special needs in private and group settings. She also is a copywriter and digital marketer. In her free time, she likes to read a good book, spend time with her family, and learn new things. She loves the outdoors and enjoys hiking, kayaking and stand-up paddle boarding.
Susan joined APAB in June 2019 and is excited to be a part of the team, and to give a Lupus patient’s perspective on arthritis research in Canada.
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.
Born and bred in British Columbia, 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 (Reaching Out with Arthritis Research) 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.
A mechanical engineer and father of three, Chris was diagnosed with Ankylosing Spondylitis (AS) in 2016. Initially he thought his back symptoms that started the year prior were due to poor posture, but quickly spreading and worsening symptoms led to his AS diagnosis. Chris spent the subsequent two years chronicling his condition, including various treatments and medications, and struggling to regain normal activities. Chris is now able to manage his arthritis through diet and lifestyle without medication, although symptoms are never too deep under the surface. He joined APAB in September 2019, both through a desire to learn more about his condition and similar types of arthritis, and to share his experiences with AS with the Advisory Board and with researchers. He hopes his experience with AS, combined with the analytical perspective of an engineer, will help researchers with their work and ultimately help other AS patients manage their symptoms.
Diagnosed with arthritis as a child, Samantha has been living, coping, and often thriving with the chronic disease for more than half of her life.
Joining the Arthritis Patient Advisory Board in 2019, Samantha looks forward to drawing on her six years of experience with national health charities to advance the mission of Arthritis Research Canada from the patient perspective.
Originally from Ontario, Charlotte was diagnosed with rheumatoid arthritis shortly after starting her Master’s of Science in Epidemiology in Western Canada. At the time, she was a 23-year-old graduate student who prioritized her academics over her health, but eventually, the pain and inflammation in her feet and hands was too much to ignore. With the support of her loved ones and her rheumatologist, regular exercise, a conscious diet, and a lot of reading, Charlotte finds herself in a place where she feels in control of her arthritis and her future.
Charlotte applies her own experiences with arthritis to her research focused on the health and mobility of older adults. She is passionate about health literacy and hopes to devote her future career to helping others understand research and make healthy choices. As a member of APAB since 2019, Charlotte is excited to be a part of a team that is dedicated to improving the lives of people with arthritis through science communication, leadership, and engagement. One of the younger members of the team, she hopes to be an advocate for others coping with the uncertainty and stress that an arthritis diagnosis in early adult life can bring.
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 25 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.
I was first diagnosed 12 years ago with osteoarthritis in my neck. Gradually it has spread to my knees, hips, fingers and toes which has required more rest and dietary modifications. Following my diagnosis I have continued to be an avid cyclist, hiker and yoga enthusiast. However, when these activities become too painful I stay active with water exercises that put less strain on the affected joints.
As a former Registered Nurse, I find the prevalence of the multiple types of arthritis in the general population a very interesting study.
With the goal of helping myself and others, I accepted the invitation to become a volunteer member of the Arthritis Patient Advisory Board. I am interested to learn about the current and future research being done by Arthritis Research Canada scientists to combat this disease and achieve earlier diagnosis, intervention and effective treatments. I am especially interested in their research projects focusing on lifestyle changes, passive and active exercise and how stress affects 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 (8-10 years) 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 British Columbia and has been fortunate to have been involved in arthritis care in BC 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 Arthritis Research Canada.
The Research Liaison role with APAB is to be a link between the Patient Advisory Board and the research scientists at Arthritis Research Canada. This includes making sure 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 Arthritis Research Canada.
As Executive Assistant to Arthritis Research Canada’s Scientific Director and Research Secretary, Patricia has first-hand knowledge of all the ongoing journal articles, conference abstracts and research awards involving Arthritis Research Canada Investigators, putting her in a unique position to offer support to the Arthritis Patient Advisory Board as their Research Liaison.