Canadian Arthritis Network - Today's Arthritis Research

Jean Légaré is the Co-Chair of the Consumer Advisory Council as well as the representative from Quebec. He was diagnosed with rheumatoid arthritis at the age of 38. He became an arthritis advocate and has been very active in a number of organizations. He served on the board of directors of Association des arthritiques de Québec, was vice-president of the Canadian Arthritis Patients Alliance, is a member of the steering committee of the Best Medicines Coalition, is a Master Trainer with the Arthritis Self-Management Program, is a member of Patient Partners ^® in Arthritis and is the Quebec City Site Coordinator for that program. He was the consumer delegate of the Quebec branch of the Arthritis Society at Arthritis 2000 which led to the creation of the Canadian Arthritis Network (CAN) and serves as the co-chair of CAN’s Consumer Advisory Council. He recently chaired the Consumer Day at the Frontiers in Inflammatory Joint Diseases Conference, which was held to establish the Canadian research agenda for inflammatory joint diseases.

Mr. Légaré retired from Bell Canada after 31 years in network engineering. He is fluent in English, French and Spanish, and has worked as a telecommunications consultant in Haiti, Mexico and Spain. He now divides his time between his six grandchildren and his advocacy activities for people with arthritis. He strongly believes in the power of patients to make things happen.

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Members

Delphine Elleze, Northern Canada

Delphine Elleze is a Dene woman and single mother who was born and raised in the Canadian Sub-Arctic, earned two Bachelor degrees in Saskatchewan and returned to the North to contribute to individual and community development. She earned a Bachelor's degree, majoring in Aboriginal Studies, followed by an Education degree. During this time, she gave birth to her only son and acquired RA - both age 15 this year.

She has taught in elementary schools, owned a successful consulting business, worked in a community development organization and served as a board member of the NWT Literacy Council and various other education and community development associations. Currently, Delphine is working with the federal government to increase employment opportunities for northern Aboriginal people.

A decade of experience in human services in a northern context has honed Delphine’s skills in personal development, group facilitation and organizational training in both Aboriginal and non-Aboriginal contexts. She has conducted extensive team teaching, team planning and facilitation and other team building workshops. Her successes include the coordination of an inter-organizational team to plan and develop a cross-cultural educational program.

Delphine enhances her formal education and professional expertise with cultural sensitivity and a genuine empathy. She offers the Canadian Arthritis Network meaningful insights into the needs and concerns of Canadians with arthritis.

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Anne Fouillard was born in Manitoba but has made her home in Nova Scotia for the past 30 years. She is a professional researcher and consultant in international development and environment. Anne is married and the mother of two teenage girls. She has long been an advocate in her personal and professional communities.

Anne was diagnosed with primary osteoarthritis five years ago and has had two total hip replacements in the last two years. Despite the worsening of her osteoarthritis, she continued to run but since her surgery her exercise consists of long distance swimming and aquabics. She credits her rigorous exercise regime for the improvement in her health. She is happy to say that she has now resumed downhill skiing and is looking forward to a future of long distance hiking and cycling.

Through personal experience, Anne has become well-versed in arthritis and acquired an in-depth knowledge of the medical system that serves arthritis patients, emerging trends in arthritis treatment and pain management and the complexities of auto-immune diseases.

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Diane Gerhard was diagnosed with rheumatoid arthritis in 1976 at the age of 33. When a friend asked “What’s a joint like this doing in a nice girl like you?” she decided to find out. She became involved with The Arthritis Society, first with their Speakers Bureau and then as one of the founding members of the Arthritis Self-Help Group, serving terms as newsletter editor and as president. She has had joint replacement in both hands and arthroplasty in both feet. Participation in a drug trial for sulfasalazine was an interesting and valuable experience, and the disease has been well-managed with this drug, and a sense of humour, ever since.

Diane has an M.Sc. in Molecular Biology from McMaster University. After her two sons were in school she returned to teaching high school Science and Mathematics in Winnipeg, retiring in 1999. She has served on a wide variety of volunteer boards for school, church and community groups and continues to do some tutoring in Winnipeg schools. When not teaching or traveling Diane enjoys photography, sailing, cottaging and skiing with her husband on Lake of the Woods in Ontario.

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Joyce Greene lives in Winnipeg with her husband and son. She was diagnosed in 1994 with severe rheumatoid arthritis and in 1995 became a leader with the Arthritis Self-Management Program. She joined Patient Partners^® in Arthritis and is a member of the Manitoba Advocacy Committee for The Arthritis Society.

In 2003, with the help of her husband and Patient Partners across Canada, they were able to raise $11,000 for The Arthritis Society’s Joints in Motion campaign. Her husband completed the marathon in Belgium in 2003.

Joyce has had two hip replacements and a C1-2 fusion. She believes the quality of her life has been improved by the research done in rheumatoid arthritis. She has experienced disabling pain but has also had a great quality of life since joining a clinical trial three years ago for a new drug. Joyce believes there is truly hope for everyone living with arthritis because of scientific research.

As a Disability Operations Officer with the Canada Pension Plan (CPP), Marlene responds to applications for benefits from people with every kind of arthritis, ranging from osteoarthritis to fibromyalgia. She attends professional training sessions to upgrade her knowledge of arthritis-related conditions and has delivered many presentations on CPP to arthritis support groups. Marlene has been very involved with the Lupus Society in Ottawa and has done fundraising and staffed information booths for The Arthritis Society.

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Catherine Hofstetter, a representative from Ontario on the Consumer Advisory Council, was diagnosed with rheumatoid arthritis in 1993 and with fibromyalgia in 1998. She was trained and certified as a 'patient partner' in Pharmacia/Pfizer Patient Partners^® in Arthritis program in 1997 and is a trained arthritis self-management program (ASMP) leader. Ms. Hofstetter is actively involved with the Canadian Arthritis Patient Alliance and The Arthritis Society, where she volunteers to advance the arthritis agenda. In May 2002, she made a presentation on access to medication to the Romanow Commission on The Future of Health Care in Canada with Denis Morrice, President of The Arthritis Society.

Ms. Hofstetter is the president of McGowan Fence & Supply Ltd., a family-owned business that has been operating in Toronto for over 50 years. She is active in the construction industry, having played key roles on both Canadian and American fencing association boards. She has also recently completed her term as president of the Toronto chapter of the National Association of Women in Construction.

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Wilson Quail joined the Consumer Advisory Council as a representative of Saskatchewan. He is a Professor Emeritus in the Chemistry Department of the University of Saskatchewan. His research has included crystallographic studies of potential drug molecules and binding sites in enzymes. He continues to be active in crystallography as a member of the staff of the Saskatchewan Structural Science Centre at the University of Saskatchewan.

Wilson was diagnosed with ankylosing spondylitis (AS) over 35 years ago and was fortunate that new drugs have continued to be developed that have resulted in effective control of his condition. He is very interested in promoting education in the consumer society and continuing research to develop new drugs and treatments as he has two children (out of four) that also have the HLA genetic marker and who have developed AS. He is concerned about the health of his three grandchildren and how arthritis may affect them.

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Corrie Billedeau was diagnosed with rheumatoid arthritis 16 years ago after suffering with symptoms of the disease for several years. Her passion for excellent arthritis education for medical professionals and patients is a direct result of her experience. It is also the reason for her involvement with the arthritis community. In 1990 Ms. Billedeau began her volunteer work with The Arthritis Society of Manitoba and became actively involved with the Manitoba Arthritis Self Help Group. She was one of the first Arthritis Self Management Leaders in Manitoba and is a member of the Advocacy Team.

In 1996 Ms. Billedeau became a Patient Partner and the Winnipeg site coordinator for Patient Partners^® in Arthritis. Recently she joined the Canadian Arthritis Patient Alliance (CAPA) Steering Committee as the Manitoba representative and she is the Co-Chair of CAPA's Education Committee. Although she is very involved in education centred volunteer activities Ms. Billedeau felt this was not enough. She lives in a small community and is often approached for information about arthritis. This points out the need for everyone from physician to patient to learn more about the disease. Ms. Billedeau is very dedicated to her volunteer activities but still finds time to read, go camping and spend time with her family.

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Anne Dooley is Vice-President of the Canadian Arthritis Patient Alliance (CAPA) and chairs its Research and Communication Committees. CAPA is an organization led by Canadians living with arthritis who are dedicated to improving arthritis care and services, and to expanding patient involvement in arthritis research, planning and policy development. She is also an active member of the Cochrane Musculoskeletal Group (CMSG), The Arthritis Society (TAS) and Arthritis Consumer Experts (ACE), and was recently appointed to the Interagency Advisory Panel on Research Ethics (PRE).

Before being diagnosed with rheumatoid arthritis in 1996, Ms. Dooley was a commercial pilot and flying instructor, and an active advocate for general aviation safety and services. When arthritis forced a change in direction she became a writer and published author and focused her advocacy efforts on arthritis. She is married, the mother of four, grandmother of five and lives in Saskatoon.

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Sandy is a person with osteoarthritis for likely more than 10 years, but not formally diagnosed until 2001. The diagnosis was followed by two total hip replacements in 2002 and 2003. During this time she was completing her degree in Human Geography at Simon Fraser University. Her area of study is in gerontology with a focus on “aging in place”, and she plans to enter the master’s program within the next year.

Sandy joined Arthritis Consumer Experts (ACE) in 2004. She feels strongly about the importance of educating consumers about chronic diseases like arthritis. She also realizes the critical importance of early diagnosis through her own personal experiences and work with ACE. In addition, Sandy is involved as a consumer in an arthritis research project and participates with the Cochrane Collaboration Musculoskeletal Review Group as a consumer reviewer. Sandy is the editor of ACE’s newsletter, JointHealth™ monthly, and has written for “Osteoarthritis and You”, the quarterly newsletter of two Canadian Institutes of Health Research and Canadian Arthritis Network funded research teams focusing on osteoarthritis.

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