Our Mission:
Advocate and provide education to improve access to health care that will extend the lives of Canadians affected by Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL)
CLLPAG Activities:
- Participate in the drug approval process by providing the patient and caregiver perspective of what it is like to live with, and be treated for, CLL & SLL. (Link to treatment access section)
- Advocate for access to new therapies and diagnostics
- CLL Live – a renowned free educational conference for patients and caregivers featuring talks by leading specialists from Canada, the US and Europe. Past conferences have attracted participants from around the world, who attend to learn and to network with others affected by CLL & SLL.
- Provide patient ‘faces’ to the CLL & SLL movement
- E-Bulletin with updates on CLL news and other relevant developments in Canada ((link to archives ebulletins(to come))
- Liaise with international CLL & SLL patient groups
CLLPAG Board
Our dedicated Board of Directors is comprised of volunteers from across Canada with strong personal connections to CLL & SLL. Most of us are patients. The Board meets every six to eight weeks by conference call to discuss CLL & SLL developments and areas for CLLPAG engagement.
- Peter Dorfman – Chair
- Jim Burke – Vice-Chair
- Deborah Baker – Past Chair
- Rebecca Drotos – Treasurer
- Kathy Green
- Ingo Viebrock
- Lorna Warwick
- Judy Watt-Watson
- Paul Yanni
- Dr. Spencer Gibson – Scientific Advisor
- Dr. Graeme Fraser – Medical Advisor
- Honourary Ex-officio Director – Chris Dwyer
History of CLLPAG
The first ever CLL patient conference was held in 2002 in Owen Sound, Ontario, on the initiative of a CLL patient. It was not a big affair but it was fun and informative with keynote speaker Dr. David Spaner of Sunnybrook Hospital, Toronto.
In 2006, there was an appeal on the ACOR CLL list serve for Canadians interested in organizing a another conference. A steering committee was formed and included representatives from CLL patients as well as Leukemia and Lymphoma Society of Canada (LLSC), Lymphoma Foundation Canada (now Lymphoma Canada – LC) and Juravinski Cancer Centre, Hamilton, Ontario.
In April 2007, ‘Trends in Treating CLL’ – A Conference for Health Care Professionals, CLL Patients, their Family and Friends came to fruition at White Oaks Hotel and Conference Centre in Niagara on The Lake. The scope was expanded drawing upon CLL patients throughout Canada and the Northern U.S. Two world renowned CLL research doctors, Dr. Terry Hamblin, Consultant Haematologist , Bournemouth, England, Professor of Immuno Haematology, Southamton, UK and Dr. John Byrd, Director, Hematologic Malignancies Program, James Cancer Hospital and Solove Research Institute, Columbus, Ohio were the Keynote speakers to over 220 CLL patients, caregivers and doctors. Dr. Susan J. Leclair, Chancellor Professor, Department of Medical Laboratory Science, University of Massachusetts, Dartmouth, Massachusetts provided enjoyable dinner entertainment. Linda Frum, author of “Barbara Frum: A Daughter’s Memoir” talked about her mother who had CLL and their CLL experience. There was not a dry eye in audience.
This conference received wide praise and acclaim by all and many friendships were formed when patients met another person with CLL for the first time. Bad to the Bone T-shirts were available to purchase and used as a fundraiser for CLLPAG.
The Chronic Lymphocytic Leukemia Patient Advocacy Group (CLLPAG) was formally founded in the autumn of 2007 in Toronto, Ontario, Canada with a Board of Directors made up of CLL patients from across Canada. It was decided that CLLPAG would ask LLSC and LFC for their support rather than becoming another blood cancer charity.
CLLPAG relies on the good health and time of its Board to make things happen. We encourage patients, their caregivers and supporters to contact us if they can help us with our advocacy.