Gordon Whitehead 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 .
Because of career demands and a peripatetic lifestyle, Gordon is a late entrant to the domain of volunteer work and arthritis advocacy. In 2003, he joined "Patient Partners in Arthritis" --- an organisation that does demonstrations of musculoskeketal examinations to health care providers and he is now Vancouver Site Co-Coordinator for that organisation. He has since become a member of CAPA (Canadian Arthritis Patient Alliance) and he is now attached to the Planning Committee for the upcoming Ottawa Summit on Standards of Arthritis Care. He is greatly enjoying his work with the Consumer Advisory Board of the Arthritis Research Centre of Canada. Gordon 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.
Rheumatoid Arthritis has been Pam’s constant companion since 1985. In the early stages of her disease, Pam became a leader of the Arthritis Self Management Programs (ASMP), sponsored through The Arthritis Society. This program personally helped her, giving her a sense of empowerment, passion, and a feeling of accomplishment in helping others. A few years later, she became an ASMP trainer to take this program across Canada and was sent to Winnipeg, Kitchener, and Hamilton to train others to put on the ASMP in their own communities. She has also contributed to arthritis support and advocacy groups in her local community of Chilliwack.
Several of the organizations of which she is a member: CAPA (Canadian Arthritis Patient Alliance), ACE (Arthritis Consumer Experts), and a member-on-leave of Patient Partners in Arthritis.
She is involved with the arthritis research community. Here, she believes that the educated consumer should be involved in every aspect of research to contribute the perspective of a person living with this disease. This has led to her involvement with: the Consumer Advisory Board of the Arthritis Research Centre of Canada; the NET (New Emerging Teams with the Canadian Arthritis Network) research projects Tooling Up for Early Osteoarthritis: Measuring What Matters; and OMERACT (international research in ‘Outcome Measures’) where she is a member of the Patient Research Partners. These are all leading edge in involving consumers 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.
Otto Kamensek has been a volunteer at ARC (Arthritis Research Centre) 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 consumers 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 Consumer Advisory Board (CAB) for the Arthritis Research Centre of Canada.
His current volunteer duties include a continuing membership in CAB with the responsibility of disseminating information to consumers, 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.
Lianne Gulka joined the Consumer Advisory Board (CAB) in 2007 and became the chair of the committee in 2010. Having lived with rheumatoid arthritis and lupus since her teen years, Lianne views joining CAB as an opportunity to represent and advocate for lupus, a low profile disease amongst the arthritis group.
Lianne has been involved with the local and provincial lupus community for the last decade, as a board member of the BC Lupus Society and a representative at the Consumer Table which facilitates ideas, interchange and discussion amongst various arthritis groups.
The research process is key to understanding disease, and the ability to have input, meet researchers, generate feedback and ideas at the CAB level is very important.
To interact with such high profile researchers, keep abreast of current research and future direction, and have the opportunity to interact and perhaps influence the research direction and application of all arthritis groups, particularly lupus, is very exciting.
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, graduate services representative, and dean of students for BC Community Colleges. These experiences have given her a unique understanding of the importance of identifying and removing barriers to learning and success, especially for those who are at greater risk of being left behind.
Nadia joined the Consumer Advisory Board in 2009. Since joining CAB, she has been involved as a research consumer collaborator, a member of ARC’s website committee and CAB’s webpage committee, a lay summary reviewer, a member of the Musculoskeletal Initiative’s Patient Support Group, and has most recently been 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 hopes to contribute to the fight for "a world without arthritis".
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 lead 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 Consumer Advisory Board of the Arthritis Research Centre of 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.
Joyce Ma was diagnosed with Rheumatoid Arthritis in 1976 and Polymyositis in 1981. She is now in remission from RA and Polymyositis but it's never far from her consciousness to be vigilant and to take care of her health.
She is always interested in learning about any new discoveries that help people with Arthritis whether it's diet, medication or new treatment options; to that end, she often attends seminars in her quest to learn as much as she can about arthritis.
Joyce has been a dedicated and active volunteer for The Arthritis Society, involving herself in several fundraising activities. She has been running The Bluebird Shop in the Vancouver Learning Centre since 1994 where she has implemented many successful fundraising campaigns. In addition, as a member of The Vancouver Community Group, she has been successfully managing The Mary Pack Cards program since 2004. Here, she also shares her experiences and how she dealt with arthritis to new patients who are on waiting lists for treatment.
In 2009, Joyce joined the Consumer Advisory Board. Her many contributions include consumer participation in several arthritis research projects and studies, member of the ROAR (Roundtable On Arthritis Research) steering committee, member of the CAB webpage committee, and lay summary reviewer.
Some of the first questions one has after a diagnosis of a medical condition are:
Is there a cure?
What is the newest treatment?
What can I do to best manage my condition?
What are the benefits and harms of treatment?
Is this information reliable and based on good quality research?
When there is insufficient evidence to answer these questions, the next question may be: Should I get involved in the research process to help advance understanding?
Sheila’s interest is in helping to get the right evidence based health information to the right people at the right time. She is passionate about people having access to quality health info to make informed decisions about their care. Those with arthritis can find answers to many of these questions through the Arthritis Research Centre of Canada and its Consumer Advisory Board.
Sheila trained as a physiotherapist, but worked most recently in the area of Knowledge Translation creating evidence informed educational resources, planning public and professional presentations, participating in strategic planning, creating patient focused educational materials and engaging the media. She retired in 2009 and joined the Consumer Advisory Board in 2011 as a representative with osteoarthritis.
Sheila is excited to be part of the team bringing the patient/consumer voice to Arthritis Research Centre of Canada projects and to help disseminate their findings to the public.
