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)

CLL Canada 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.
  • 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.
  • Liaise with international CLL & SLL patient groups

CLL CANADA 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 CLL CANADA engagement.

  • Raymond Vles – Chair
  • Tess Bernacki – Vice Chair
  • Paul Yanni – Treasurer
  • Judy Watt-Watson – Secretary
  • Kathy Green – Board Member
  • Jim Burke – Board Member
  • Eric Pitters – Board Member
  • Ingo Viebrock – Board Member
  • Dr. Spencer Gibson – Scientific Advisor
  • Dr. Graeme Fraser – Medical Advisor
  • Deborah Baker – Honourary Ex-Officio

History of CLL Canada

In the Beginning
The first ever CLL patient conference was held in 2002 in Owen Sound, Ontario, on the initiative of Tim Thompson 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. It planted the seeds of the CLL Patient Advocacy Group, which became CLL Canada in November 2020.

The First Canadian CLL Conference 2007
In 2006, there was an appeal on the ACOR CLL listserve for Canadians interested in organizing another conference.  A steering committee was formed composed of 7 CLL patients as well as representatives from the Leukemia and Lymphoma Society of Canada, Lymphoma Canada and the Juravinski Cancer Centre.

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 325 CLL patients and caregivers throughout Canada and the Northern U.S. Two world renowned CLL research doctors, Dr. Terry Hamblin from Southampton, UK and Dr. John Byrd, from Columbus, Ohio were the Keynote speakers. 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 between the attendees.

The Founding of CLL PAG in 2007
The Chronic Lymphocytic Leukemia Patient Advocacy Group (CLLPAG, now called CLL Canada) 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 existing organizations for their support rather than becoming another blood cancer charity.

The Second Canadian CLL Conference 2009: Trends in Treating CLL
CLL Canada, then called CLLPAG, the Leukemia and Lymphoma Society of Canada and the Juravinski Cancer Center organized the 2nd Canadian CLL Conference. We welcomed 307 registrants to the Sheraton Fallsview Hotel in Niagara Falls from April 24-26, 2009 for Trends in Treating CLL. The Scientific Session was on April 24 and the Patient Session was on April 25 with Special Issue Workshops taking place after breakfast on April 26. Dr. Ronan Foley chaired the events. Dr. Neil Kay and Dr. Bill Weirda headlined the speakers; return speakers included Dr. Graeme Fraser and Dr. Susan Leclair. Dr. Chaya Venkat, a noted patient advocate spoke about on Facing Therapy Decisions with Eyes Wide Open. Video recordings were made available for purchase post conference.

CLL Live 2012: Living, Sharing, Learning, Caring
The name of the Canadian CLL Conference was changed to CLL Live in 2012 as a recharged Board of Directors partnered with Lymphoma Canada and Juravinski Cancer Centre to organize our 3rd conference with about 220 attendees at Embassy Suites Hotel in Niagara Falls. This conference was held from April 19-21, 2012 at the Embassy Suites Hotel, Niagara Falls. Ontario. Patients and their caregivers and focused on Living, Sharing, Learning, Caring. The Medical Chair was Dr. Ronan Foley and the keynote speaker was Dr. Michael J. Keating.

CLL Live 2015: Recent Developments in CLL Treatments
CLL Live 2015 was held from Thursday, April 23 to Saturday, April 25, 2015 at the Sheraton on the Falls Hotel and Conference Centre, Niagara Falls, Ontario. 276 patients, caregivers and sponsors gathered to learn about “Recent Developments in CLL Treatments – European, American and Canadian Perspectives’’. Dr. Graeme Fraser was Medical Chair of the 4th International CLL Live Conference. Keynote Speaker. Dr. Michael Hallek provided the European Perspective on CLL, with the American perspective provided by Dr. Michael Keating. Dr. Spencer Gibson, CLLPAG Scientific Director presented the Canadian Perspective on CLL Research. Erin Streu R.N discussed the importance of screening for Secondary Cancers. Dr. Nicole Lamanna was a presenter for the first time and her ‘When and How to Treat’ was informative for everyone.

Advocating for Access to CLL Treatments
Since 2012, CLL Canada (formerly known as CLL PAG) has successfully advocated for patient access to 12 new CLL treatments in Canada through its participation in the pan Canadian Oncology Drug Review (pCODR) and INESSS (Quebec), leading to the funding of these new treatments by provincial governments.

This was achieved by providing convincing evidence of the improvements the new treatments made in the lives of patients, their caregivers and their families. This data was gathered through surveys of Canadian and international patients who had had experienced the new treatment in clinical trials or through the compassionate access program as well patients in countries where the treatment was already used. This work was done in partnership with Lymphoma Canada and/or the Leukemia & Lymphoma Society of Canada

CLL CANADA Today
The eight person Board of CLL Canada meets 5-6 times per year by teleconference and once yearly in person.

CLL Canada continues its advocacy on behalf of CLL patients. We make the patient voice heard in the decisions that govern to access to new treatments as well as the reform of the federal regulations on drug pricing, to ensure the latter do not hinder the introduction of new treatments to Canada. We are also bring the patient voice to discussions with the pharmaceutical industry and other stakeholders in the health system.

The planned 2021 CLL Live conference has been postponed due to the Coronavirus pandemic. A decision on the date of the next conference will be made once the pandemic is no longer an ongoing concern.

Christopher Harington Dwyer
1946 – 2019

It is with great sadness that we announce the death of Christopher (Chris) Harington Dwyer. He was a founding member of CLL Canada and for many years a most valuable member not only of our group but an acknowledged expert on CLL by patients the world over. For his significant contributions in the field of CLL Chris was recognized as a 2018 CURE CLL Hero last December in San Diego, CA as part of the 2018 ASH Conference. Chris will be sadly missed by his many grateful and devoted followers throughout the world. We offer our heartfelt condolences to his family.

Follow this link for a profile of Chris Dwyer https://www.curetoday.com/view/cll-patient-advocate-helped-many