CLL Patient Advocate Helped Many

Christopher Harington Dwyer, a patient advocate who spent years offering hope, encouragement and strength to fellow patients with chronic lymphocytic leukemia (CLL), died April 15 at his home in Ottawa, Ontario, Canada. He was 73.

Dwyer was a winner of CURE®’s inaugural CLL Heroes Award, given Dec. 2, 2018, in San Diego, California. The event recognized Dwyer and three others for their efforts to improve quality of life for people with CLL. In this bone marrow cancer, B lymphocytes, a type of white blood cell, are not able to mature into healthy cells that fight infection.

Many knew Dwyer as the host of the Facebook group Bad to the Bone — Living With CLL and a top contributor to numerous online chat groups, including the Association of Cancer Online Resources CLL list and the CLL support group on the HealthUnlocked site. In addition, he founded the CLL Canada informa­tional website. Through these forums, he offered emotional support, taught about the disease and how to live well with CLL, reported breaking news about therapies and clinical trials, and answered questions about treatment options and medical procedures in a way that was clear and understandable. His conversa­tions with patients online and offline reflected exhaustive research into the current state of the field.

He volunteered at a board level for the CLL Patient Advocacy Group in Canada for many years and through those efforts helped many patients get the care they needed by advocating for new therapies and diagnostics. He was instrumental in launching CLL Live, an international, three-day, patient-focused conference.

An avid photographer, Dwyer often included images of flowers with his communications, a reminder of the beauty in life that persists despite the challenges of CLL.

His work changed the lives of countless patients and inspired some of them to become advocates themselves.

“Sometimes when a giant falls, the crash is heard around the world,” wrote Brian Koffman, chief medical officer and executive vice president of the California-based CLL Society and one of Dwyer’s fellow 2018 CURE® CLL heroes.

“Chris Dwyer was a towering pillar of the CLL community whose influence extended far beyond his work within his baby, CLL Canada,” Koffman wrote. “His silence will be heard by patients and caregivers and health care providers in six continents that came to depend on his straight-to-the-point factual underpinning of almost any CLL topic.

“He was a generous friend, a dogged researcher, a truth seeker, an encyclopedic CLL sage, a Renaissance man, a revealing photographer, a powerful advocate and a true CLL Hero. … Rest in peace, Chris. Your legacy of informing and buttressing patients will live forever. You have changed how patients cope and how their providers respond.”

Tess Bernacki, a CLL survivor who nominated Dwyer for the CURE® award, described him as “the backbone of the CLL community” and called the news of his death devastating.

“Chris was a wealth of knowledge within the CLL community on an international level, interacting with fellow patients and caregivers on a daily basis,” she said. “While under­going his own personal battle with CLL and a Richter’s transformation (a change that turns CLL into an aggressive and hard-to-treat type of non-Hodgkin lymphoma), Chris continued to support others with their own challenges. Chris was a powerful advocate, a selfless and tireless supporter and made a huge difference in the lives of so many. The CLL community is grieving a huge loss, the loss of an incredible advocate, cherished friend and CLL hero.”

In the days after Dwyer’s death, hundreds of comments were posted online by friends, family and members of the CLL community hailing from all over the world, praising him for his selflessness and knowledge.

Dwyer was the father of Tara Mann and Michael Dwyer and the grandfather of Brennan Mann and Paisley Mann. He spent many happy years raising his children with his former spouse, Jo-anne Dwyer.

Donations, directed specifically to CLL, can be made in Dwyer’s memory to Lymphoma Canada at 6860 Century Avenue, Suite 202 Mississauga, Ontario L5N 2W5 or at https://tinyurl.com/y5q5v9od.

^{CHRISTOPHER DWYER was recognized as an inaugural CLL Heroes award winner in December 2018. Standing with him is his daughter, TARA MANN.}