Arthritis Patient Advisory Board
Senator Pat Carney
Senator Pat Carney was diagnosed with osteoarthritis and fibromyalgia in 1988, and has turned her personal experience into advocating on behalf of those living with arthritis and a strong belief in research as the key to “a world without arthritis.”
Born in Shanghai, China, and educated in Canada, Senator Carney had a career in journalism and economic consulting before entering politics. She was first elected to the House of Commons in February 1980 as the Member of Parliament for the riding of Vancouver Centre. She also served as federal Minister of Energy, Mines and Resources; Minister of International Trade; and President of the Treasury Board.
Shortly after the pain of living with arthritis forced Senator Carney to retire from active politics, she was invited on to the board of directors of The Arthritis Society, BC and Yukon Division. She served for six years and, in 1998, was presented with an honourary membership in the society. Senator Carney helped establish the Arthritis Research Centre Canada in 2000, and serves on its board as a founding member and the board’s liaison with the Arthritis Patient Advisory Board. In 2003, she was appointed to the board of the Canadian Arthritis Network, a not-for-profit organization dedicated to fostering integrated, trans-disciplinary research and development.
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.
Jay Fiddler was diagnosed with Stills Disease in December 2001 and brings the “newly diagnosed” perspective to her work with the Arthritis Patient Advisory Board. She is also the British Columbia representative of the Consumer Advisory Council of the Canadian Arthritis Network. In this role she is responsible for representing and articulating the needs of British Columbians living with all forms of arthritis, in addition to serving as a voting member on the Network’s Scientific and Medical Advisory Committee and Training and Education Committee.
Currently, she is a PhD student at University of British Columbia and holds a research fellowship with the Canadian Blood Service. Jay is also a co-investigator on a two-year grant funded jointly through the CIHR, CBS and Bayer to study the social determinants of blood donor participation in British Columbia. Prior to this she spent four years working as a Research Consultant and Health-Care Trainer for AIDS Vancouver and AIDS Calgary Awareness Association. This work afforded her the skills to interpret medical research and the ability to effectively interface with community agencies to build research and educational partnerships.
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.
Otto Kamensek has been a volunteer at Arthritis Research Canada and other arthritis related groups since 2003. During this time he has been a member of the Knowledge Exchange Task Force as a Research Ambassador for the Institute of Musculoskeletal Health and Arthritis, where he worked with other patient volunteers, health professionals and researchers. In addition, he served a five-year term with the Patient Partners in Arthritis program where he also acted as a coordinator for the BC Regional program. Otto was the first term Co-Chair and a standing charter member of the Arthritis Patient Advisory Board (APAB) for Arthritis Research Canada.
His current volunteer duties include a continuing membership in APAB with the responsibility of disseminating information to patients, health professionals and the general public. Delivering lectures on living with arthritis to health care and sociology students is an example of his work in knowledge dissemination. He is also a steering committee member and co-creator of ROAR (Roundtable on Arthritis Research).
The above volunteer work compliments his communication skills acquired from his employment in the electronic manufacturing industry as a purchaser, where he was responsible for buying and sourcing items from North America, Asia and Europe.
Otto was diagnosed with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) over thirty-five years ago, at the age of nine. Over those years he has had many different treatment plans and a combination of total replacements and revision surgeries for his hips and knees alone.
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.
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.
Colleen Maloney was diagnosed with rheumatoid arthritis in 1974. Colleen’s experience with arthritis advocacy began in 1986. In the beginning she advocated for herself. Within two years she was networking with other people with arthritis establishing the first support group in Calgary and writing a quarterly newsletter to disseminate information. Ten years later she would begin the process again in Saskatoon.
Through contacts with arthritis colleagues, the rheumatology team, and The Arthritis Society, she was involved in bringing the Arthritis Self Management Program to Alberta and training TAS members to lead it. She was one of the founding members of The Arthritis Advocacy Committee in Alberta and a member of the first community Board of Directors. Her work in the volunteer sector and a move to Saskatchewan led to employment with The Arthritis Society in 1996 in the role of client advocate, educator, special events facilitator, and fundraiser.
Experience, opportunity and a belief in the national vision of her colleagues brought her to the Canadian Arthritis Patient Alliance, Patient Partners and the Arthritis Patient Advisory Board of the Arthritis Research Canada. Working with the medical research community and allied professionals, people with arthritis are making a difference by influencing the arthritis research agenda, educating health care teams, obtaining the best medicines, and accessing arthritis health care professionals and services. Together we will create a world without arthritis.
Rheumatoid arthritis has been Pam’s constant companion since 1985. She believes that every aspect of most arthritis research should have the educated patient be involved, to contribute the perspective of a person living with this disease. This has led to her involvement since 2002 with the Arthritis Patient Advisory Board of Arthritis Research Canada and, since 2004, with the international research group ‘OMERACT’ (Outcome Measures in Rheumatology). Both are leading edge in involving patients as active members of the research TEAM at the arthritis research table. She is very proud to be involved in these endeavors, sharing her passion, experiences, and knowledge and contributing to the improvement of lives of people with arthritis.
I look forward to sharing my experience with the Arthritis Patient Advisory Board, both as a team member as well as the Vice Chair of the Arthritis Research Canada Board of Directors.
As an interior designer diagnosed with Osteoarthritis in 2003 I know, first hand, the challenges that we all face. I also know that I can lend unique insights and creative solutions that will improve the way arthritis sufferers live, work and play.
As a business entrepreneur for over 30 years in the Interior Design industry I can bring both right and left-brain thoughtfulness to this advisory board.
I’m tenacious when it comes to solutions. No is not a popular word in my bi-lingual vocabulary. I will work hard to lobby my peers and bend the ear of design and architecture professionals about the challenges arthritis sufferers, both young and old, face today.
I know what it’s like to live with this debilitating disease and I’m convinced that together we can improve our prognosis and care for the future and our living and working environment right now.
Nadia was diagnosed with rheumatoid arthritis in 2003, but even before her diagnosis she understood well the impact arthritis has on one’s life as her mother has lived with lupus for over 40 years. For 20 years, she worked in post-secondary education as a teacher, curriculum developer and administrator; her experience included working with a broad socio-economic student base. These experiences have given her a unique understanding of the importance of identifying and removing barriers to learning and success.
Nadia became a member of the Arthritis Patient Advisory Board in 2008; in 2010 she was appointed a Research Ambassador for the Knowledge Exchange Task Force of the Institute of Musculoskeletal Health and Arthritis. She believes life experiences make for great teaching tools. Having lived with this disease herself and having watched her mother do the same, Nadia contributes to a better understanding of arthritis diseases with the hope of seeing a world without arthritis in her lifetime.
Gordon was first diagnosed with rheumatoid arthritis in 1976. At that time he was a serving diplomat in the Canadian Foreign Service and he found that confronting and treating his disease proved particularly challenging when moving to and from places such as Islamabad, New Delhi, London, Bonn, Warsaw and other locales where treatments were sometimes inaccessible or at a remove from Canadian norms. He served in a wide variety of positions in External Affairs, latterly that of Director of Programmes for Europe, which embraced responsibility for Canadian academic, cultural and scientific exchanges with Western and Eastern Europe. He was also on the official Canadian Delegations to formal meetings on Cultural Exchanges and Human Rights, held under the auspices of the Helsinki Accords.
A native of British Columbia, Gordon moved back to the province when he became Director of Immigration Policy for the Government of BC in 1992. In 1994, he was appointed as a judge on the Immigration and Refugee Board in Vancouver, a position he retired from in 2002.
As he neared retirement, Gordon became active in volunteer work and arthritis advocacy. In 2003, he joined “Patient Partners in Arthritis” – an organization that then did demonstrations of musculoskeletal examinations to health care providers. He has since become a member of CAPA (Canadian Arthritis Patient Alliance) and an APAB Member. From 2005 to 2008, he served as the Co-Chair of the Arthritis Alliance—a national umbrella organization of more than 20 arthritis groups and agencies. He greatly enjoys his work with the Arthritis Patient Advisory Board and Arthritis Research Canada and believes strongly that we Canadians have both the collective will and the capacity to make the Canadian Health Care system the best and most responsive in the world for persons afflicted with arthritis and other chronic conditions.