MESSAGE Daring to Set Our Sights Beyond Kidney Disease Less than 50 years ago, a diagnosis of kidney failure meant certain death. Yet, starting with the vision of a handful of people who knew the value of investing in kidney research, The Kidney Foundation of Canada took root, transplantation became possible, and dialysis modalities and treatment options improved. Now, 40% of those who benefit from a kidney transplant, do so from a living donor, a reality inconceivable when The Kidney Foundation was getting established. The National Board of Directors has made a clear commitment to reach out to the Canadian kidney community, including our 5,000 Facebook Fans; the nearly 38,000 people in Canada on renal replacement therapies; the 40,000 volunteers who canvass, walk and run in support of The Kidney Foundation or who support us in other ways; and the 2.6 million individuals in Canada who have kidney disease, or at risk of developing it.
Much has changed since The Kidney Foundation’s early years, and throughout 2010, the National Board of Directors has consulted widely and reflected deeply to better understand and define who it serves. Most broadly, the Board knows that the Foundation is morally accountable to the people of Canada, and future generations of Canadians, given the tremendous human, social and economic burden of kidney disease. More specifically, we are morally accountable to individuals and organizations in Canada committed to reducing the burden of kidney disease. Most importantly, however, the Board acts on behalf of Canadians who already have kidney disease, plus those who are at risk of being affected by kidney disease, both now and in the future. With this extensive community in mind, and despite the global economic downturn affecting charities such as our own, we invested over $4 million in research in 2010 alone. We strengthened our investment in the landmark Kidney Research Scientist Core Education and National Training Program (KRESCENT), a collaboration with professional associations, government, industry and private donors to ensure the best young kidney researchers in Canada receive the world-class support needed to develop the next generation of leaders in this field. Dr. Kevin Burns, the 2010 winner of The Kidney Foundation’s Medal for Research Excellence, is amongst the dedicated founders of the KRESCENT program. We salute him and the many other champions who allow us to fund and stimulate innovative research that reduces the burden of kidney disease.
We supported the Canadian Transplant Games held in Quebec City this year.
This past year is rich with examples of our ability to branch out into every province and serve individual communities. We encouraged – and continue to support – the important work led by the Canadian Blood Services to strengthen the organ donation and transplantation system in Canada, including the realization of a Living Donor Paired Exchange registry that is now active in all provinces. The Living Organ Donor Expense Reimbursement Program, originally piloted by the BC Branch four short years ago, now exists in practically every province. We have developed awareness and screening programs for at-risk communities such as Canada’s First Nations and have celebrated the kidney patient experience through our renewed Kidney Stories of Hope testimonial campaign. We piloted a new awareness event, the Kidney March, and provided over $300,000 in short-term financial asistance to people in dire need of help to travel to dialysis sessions, as well as other essential services. Thanks to all of you who have contributed to growing and serving the kidney community. We could not have come this far without you. There’s much left to do, so we invite you to take a few moments to appreciate some of our 2010 achievements while renewing your commitment to accompanying us even further. We’re daring to set our sights higher, to imagine a time when kidney wait lists, and eventually even kidney disease, will be a thing of the past.
Kathryn Richardson, National President
Paul Shay, National Executive Director
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Research Every year, The Kidney Foundation funds excellent peer-reviewed research and recognizes a leader through its Medal for ReseaRch Excellence. 2010 Medal for Research Excellence: Dr. Burns’ research work has focused on the functioning of the kidney-based hormone system that regulates blood pressure and fluid levels (renin-angiotensin system or RAS). His laboratory has revealed insights into the function of a RAS enzyme called ACE2, which may protect against kidney damage. Dr. Burns has also demonstrated a commitment to translating his studies at the clinical science level to patients affected by kidney disease.
2010 Medal for Research Excellence: Dr. Kevin Burns Past President of the Canadian Society of Nephrology, Dr. Burns chairs the Steering Committee for the Kidney Research Scientist Core Education and National Training (KRESCENT) Program, a unique national research-training program for clinical and basic science trainees that he played a key role in founding. Dr. Marie-Josée Hébert, Shire Chair in Nephrology, Transplantation and Renal Regeneration at the Université de Montréal notes that “Dr. Burns was instrumental in making the KRESCENT Program a reality. He still shows an incredible dedication and leadership in the training of young scientists who will be optimally prepared for developing innovative and multidisciplinary research programs.” Since the first competition in 2004, the KRESCENT Program has awarded 27 Post-Doctoral Fellowships, 9 New Investigator Awards and 1 Allied Health Doctoral Award. Mathieu Lemaire is one of the most recent entries into the program, having received a 2010 KRESCENT Fellowship.
Dr. Lemaire will use cutting-edge genomic technology known as whole exome capture to make a snapshot of nearly all the human genes at once to identify those involved in Dent’s disease. Dr. Aronson, a world expert on proximal tubule physiology, is one of Dr. Lemaire’s PhD thesis committee members. This figure is excerpted from one of Dr. Aronson’s papers featuring the exome capture.*
2010 KRESCENT Fellow: Dr. Mathieu Lemaire Dr. Lemaire is currently pursuing a PhD at Yale, focusing on Dent’s disease: a genetic disease of the proximal tubule, which is one of the most important parts of the kidney filtration system. The proximal tubule plays a key role in reabsorbing vital components such as sodium, water, glucose and amino acids back into the blood. When the proximal tubule does not work, patients become sick since their bodies can’t retain these vital elements. Genetic diseases of the proximal tubule are severe and never go away. Currently, two genes are identified in the development of Dent’s disease. However, there is a large group of people who have a disease that looks exactly like Dent’s disease but which does not have a mutation of these two genes. This means that there are very likely other genes involved in Dent’s disease. Finding novel disease-causing genes for Dent’s Disease will have important diagnostic implications for patients and may suggest new therapies as well as furthering general understanding of proximal tubule function.
*Biemesderfer D et al. J. Biol. Chem. 2001; 276:10161-10167 © 2001 by American Society for Biochemistry and Molecular Biology
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SERVICES EVERY YEAR, THOUSANDS OF CANADIANS ARE DIAGNOSED WITH KIDNEY DISEASE AND HAVE THEIR KIDNEYS FAIL. OUR SERVICES ARE THERE TO HELP THEM. The Kidney Foundation’s services are often crucial in helping individuals make the transition from being at an early stage of chronic kidney disease to patients requiring life-saving treatment. From information and referral to peer support, educational materials and short-term financial assistance, The Kidney Foundation provides help where it is most needed in communities across the country. “I am so thankful to The Kidney Foundation for their financial help. The Foundation gave us money that went towards rides to dialysis clinics for my mom Edna MacRae,” says Liz MacRae (pictured right with her mother). Liz MacRae is the 2010 Quebec awardee of the Kidney Stories of Hope Campaign.
Transportation to and from treatment, particularly dialysis, is a tremendous burden for many people living with end-stage kidney disease in Canada. Rural and remote populations find themselves at a distinct disadvantage in terms of easy access to life-sustaining treatments. The cost of transportation frequently proves a taxing load given the physical and emotional demands of some treatments. In Newfoundland alone, 2010 saw a 36% increase in the number of applications for short-term financial assistance. The Kidney Foundation succeeded in serving nearly 1,000 people across Canada through this one program, with about half requiring transportation assistance and others needing support with accommodation or the purchase of groceries to meet the challenging restrictions of a renal diet.
Information on diabetes and high blood pressure, the two most frequently identifiable and treatable causes of end-stage kidney disease, was widely sought throughout 2010. The Kidney Foundation distributed almost 50,000 brochures and Living with Kidney Disease manuals.
“I have had my transplant for 36 years. The Kidney Foundation helped us out to go to 3 different weekend conventions and the support was phenomenal! The workshops were informational and enjoyable and I met all kinds of other dialysis and kidney transplant patients,� says Pamela St. Pierre (pictured right), who also teaches painting to dialysis patients. Pamela is the Atlantic Region awardee of the 2010 Kidney Stories of Hope Campaign.
Manitoba continues to record the highest prevalence and incidence of kidney disease in Canada, with First Nations people representing 50% of all newly diagnosed patients. The Manitoba Branch has developed an Aboriginal curriculum for primary and secondary prevention of kidney disease, including screening.
In 2010, the Saskatchewan Branch received funding to work with three First Nations communities on a project called, Building Bridges, in which participants received information about chronic kidney disease (CKD) and were also screened for it.
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RAISING AWARENESS There are 2.6 million people in Canada who have kidney disease, or are at risk – and many don’t even know it. WE’RE GETTING THE WORD OUT. The significant number of people impacted by kidney disease is one of the central motivating factors for The Kidney Foundation’s drive to continue raising awareness of: risk factors for disease; people and groups who may be at greatest risk; how to prevent or reverse disease progression; how to manage kidney disease once it’s diagnosed; and the importance of raising money for research into treatments and cures. From runs and walks, to community breakfasts and health screenings, Branches work within their communities to increase awareness of the consequences kidney disease could have on one’s life if left undiagnosed or untreated. Richard and Denise Davidson participated in The Kidney Foundation’s inaugural Kidney March. They walked in honour of their son, who received a transplant from Richard 17 years ago.
The Kidney Foundation holds three major awareness events annually: two national, the other global. In 2010, the Southern Alberta Branch of The Kidney Foundation spearheaded a signature event: Kidney March, in which hundreds of people walked 100 kilometres in 3 days from K-Country to Calgary – the furthest they’d ever walked to raise the most money they’d ever raised, in a commitment to making a difference to kidney disease. The event captured the hearts and imagination of the public, while speaking to the stamina and strength required to brave kidney disease. Another national event, the Kidney Stories of Hope Campaign, encouraged the submission of e-testimonials from across the country from those personally touched by disease. Its goal was to solicit as many stories as possible with a view to lessening the burden through the sharing of meaningful experiences. The e-Campaign succeeded in soliciting numerous compelling stories from individuals who were newly diagnosed and in the earlier stages of disease, to those who experienced kidney failure first-hand and lived to
“In late 2006, my husband Dan was diagnosed with kidney failure. 2007 was the year we found The Kidney Foundation of Canada. In 2008, we discovered the Walk of Life – York Region was having their inaugural walk – and Dan realized how many people love and support him. We secretly formed our Team GOTCHya Covered, had a logo designed and the team (family, friends, classmates), proudly wearing our shirts, surprised him with a party. This day will forever be in our memories. GOTCHya Covered aimed to raise a total of $10,000 for kidney research,” writes Debbie Underwood, the Ontario awardee of the 2010 Kidney Stories of Hope Campaign.
recount how they moved forward and gave back to their kidney community. Five entries were awarded prizes, one each from Quebec, Ontario, B.C. and the Atlantic and Prairie provinces and stories were published on The Kidney Foundation web site and garnered media coverage across the country. World Kidney Day, celebrated annually the second Thursday of March, saw The Kidney Foundation join forces with countries around the world to promote understanding of the links between kidney disease and high blood pressure, diabetes and cardiovascular disease. Branches set up information kiosks and encouraged passersby to have their blood pressure checked and to pick up an Am I At Risk brochure, while an on-line Kidney Quiz challenged participants’ knowledge and helped transmit helpful tips for becoming kidney savvy.
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Organ Donation Individuals requiring a kidney represent over 70% of Canada’s organ transplant waiting list. OFTEN, THEY TURN TO THE KIDNEY FOUNDATION FOR LEADERSHIP AND SUPPORT. Daily, we hear about the difference a healthy, fully functioning kidney makes in the lives of our constituents. And so, we work tirelessly, both autonomously and collaboratively, to reduce barriers to organ donation. Thus, when record years, such as 2010, come along with a number of outstanding successes, we mark the moment and renew our commitment to taking positive action in this area. Alberta Minister of Health and Wellness, Gene Zwozdesky (left) holds up a green ribbon, in promotion of organ donation, with Ken Hillerud, a living kidney donor (right) at the media event announcing the launch of the Alberta LODER program. Photograph by: Walter Tychnowicz, edmontonjournal.com
In July 2010, the Northern Alberta and Territories Branch of The Kidney Foundation received provincial funding to administer a Living Organ Donor Expense Reimbursement Program (LODERP) for the entire province. The program’s goal is to reduce out-of-pocket costs for living donors who are willing and able to donate an organ. Expenses that can be covered under the program include travel, accommodation or part of revenue loss due to time away from work. The first program of this kind was piloted by The Kidney Foundation’s BC Branch together with BC Transplant in 2006; and since then, similar ones have taken root in a number of provinces, including Ontario, Nova Scotia and Manitoba. Most recently, in November 2010, the provincial government of Quebec made two significant announcements affecting living kidney donors and recipients: its intention to put in place a LODER program starting April 2011 and its agreement to participate in Canadian Blood Services’ nation-wide Living Donor Paired Exchange registry. These were tremendous coups given that the Quebec Branch of the Foundation had made several representations to the provincial government on the importance of the province’s participation in the nation-wide registry and had spent several years advocating for a provincial LODER Program. Provincial commitment to these initiatives, which The Kidney Foundation continually kept in its sights, provided the much-needed assurance that Canadians requiring a kidney – regardless of
The Kidney Foundation of Canada’s Newfoundland and Labrador Branch and the OPEN program (Organ Procurement and exchange in Newfoundland and Labrador) joined forces to present a “Celebration of Courage”. This special evening of personal and professional reflection was highlighted by the awarding of a special “Gift of Life” medallion on which the donor’s name and date of donation was engraved. Bernice Lundrigan of Spaniard’s Bay was one of those recognized at the event. Bernice donated a kidney to her husband Robert in 2009 and together they began what they call their second life together.
region of residence – could register and increase their chances to access an available living organ for transplant and that able Quebec donors would not be personally penalized for their willingness to give. On the heels of these pivotal Quebec announcements, Canadian Blood Services’ Living Donor Paired Exchange program performed the first match to include kidney patients and donors from all across Canada, underscoring the importance and value of the concerted efforts needed to improve the lives of those waiting for transplant surgery. Achievements such as these serve to remind us of the significance of breaking new ground, while honouring how far we’ve come. In 2010, The Kidney Foundation supported the fifth edition of the Canadian Transplant Games, held in Quebec City. These Games are critical to nationally recognizing the generosity of organ donors, celebrating the renewed health of organ recipients and sustaining the hope of kidney patients desirous of a dialysis-free life. The community spirit of the Games and of the individual successes they bring to light, are also captured by many Kidney Foundation Branches and Chapters as they hold events throughout the year to raise awareness of organ donation and to pay tribute to both donors and beneficiaries at the local level.
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Thank You TO OUR SUPPORTERS The Kidney Foundation and its many beneficiaries are extremely grateful for the community-minded companies, groups and individuals who support us in so many ways, be it through their contribution of time, expertise or money. While it is impossible for us to list everyone who has supported us, we would like to take this opportunity to identify those that have created endowment funds to provide ongoing and stable resources for our programs and services.
FOUNDER’S CIRCLE The Shirley Alison Bettess Research Endowment The Nathan Block Research Endowment The Dr. Sandra Cockfield Endowment The Mayor Don Cousens & Aline Cousens Endowment The Charles & Adeleine Hill Endowment The Suzanne MacLean Transplant Research Endowment The Arthur Malott Memorial Endowment The Agostino Monteduro Endowment The Gladys Penfold Endowment The Michel Perron Research Endowment The Patty Read Endowment The Royal Canadian Legion, Mount Pleasant Branch, No. 177 Endowment PRESIDENT’S CIRCLE The A.J. Casson Endowment The Jack Guignon Patient Services Endowment The Daniel Hall Mitchell Endowment The Robinson Endowment Fund BENEFACTOR The AGM Members Endowment The Colter Family Endowment The Frances R. Harvey Endowment The Jeanie Allan Morgan Endowment The Storeimage Endowment The Donald & Barbara Copan & Helen (Nellie) Thomson Endowment
Mr. Monteduro, founder of the successful Italian Night fundraising dinner, passed away in December 2010. Mr. Monteduro was passionate about finding a cure for kidney disease; and along with a group of dedicated volunteers, he raised more than $800,000 in the past 26 years in support of kidney research. In 1999, the Italian Night Committee established The Agostino Monteduro Endowment Fund. The fund, which has more than $500,000 endowed, will perpetually support The Kidney Foundation’s mission, programs and services.
PATRON The Marcia Bell Research Endowment The Ontario Branch Campaign Endowment Fund The Molly So-Fun Chong Endowment The Ida B. Eagles Endowment The Margaret-Ann Irwin Endowment The Robert Kay Endowment The Ronald E. Kelter Research Fund The Kerry Talmage Memorial Endowment The David Taylor Memorial Bursary Fund The David Watson Bike Canada for Kidney Fund PARTNER The Basic Science Endowment The D.E.A.R. Berry Endowment The Esther Lam Endowment The Arto Okutan Family Endowment The Minnie Renkema Family Endowment The Jean-Claude Robichaud Memorial Fund The Turley Family Endowment The Alison Walker Memorial Trust Fund The Xandra Fund Endowment
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Thank You ASSOCIATE The Dr. Daniel G. Bichet Endowment The Janet Bick Research Endowment The Marjorie Ann Cramer Endowment The Peter & Suzanne Davis Research Endowment The Deloitte & Touche Research Endowment The Doyle-Kelly Family Endowment The John N. & Sophia Economides Endowment The German New Brunswick Association Research Endowment The Joanne Kappel Endowment The Walter Roberts Memorial Fund The Reginald Steers & Andrée Thériault Steers Endowment SUPPORTER The Niloufer and Mike Bhesania Endowment The Jim Biles Memorial Research Endowment The May Bostock Endowment The Scott, Randy & Ross Brower Memorial Endowment The Andrey Cybulsky & Daria Trojan Endowment The Danièle & Robert Deslauriers Family Endowment The Tetiana M. Gerych & George Sawchyn Endowment The Dr. Colette Girardin Endowment The Betty Jarvis Endowment The Jason Kroft & Family Endowment The Channing and Iris Kyer Memorial Fund The Denis A. Marquis & Marie Fragasso Endowment The Dr. Pierre Nantel Endowment The Justin Poy Research Endowment The Dr. Rankin Endowment The Rudy Senft Endowment The Paul Shay Endowment Fund The Bob Smith Endowment The Patrice Waché Endowment FRIEND The Silvana Anania Endowment The Harold W. Ashenmil Endowment The Frances Ashfield Endowment The Pierrette & Pierre Beauvais Endowment The Philippe Bouchard Endowment The Michel Bouvier Endowment The Branch Executive Directors Endowment The Robert Glen Brown Memorial Endowment The Sherry Buckle Endowment The Jian Shiang Chum Endowment The Jacques & Monique Davignon Endowment The Louise & André De Léan Endowment The Scot DeJong & Alexya Heelis Endowment The Denyse Demers Endowment The Yvon Dupuis Endowment The Eastern Ontario Branch Emeritus Council Endowment The Edmonton Volunteers Research Endowment
The Eugene J. Erler Endowment The Fort Employee Benefits Endowment The John & Mary George Endowment The Geoffrey N. Hendy Endowment The Vera Margaret Henricksen Endowment The Baby Jacob Endowment The James Klotz Endowment The Daniel Lajeunesse Endowment The Guy Langlois Endowment The Chantale Lauzon Endowment The Dr. Serge Lemay & Dr. Tomoko Takano Endowment The Alice & Edward Leon Endowment The Marrero Endowment The Ina Swedler McCarthy Endowment The Barry & Mary Catharine McDonnell Endowment The Dorothy McElroy Endowment The Morris Family Endowment The Bertha Ngai Endowment Fund The Linda Pellas Endowment The Pigeon Endowment The Dr. Basil M. Plumb Research Endowment The Danielle Poulin & Michel Girard Endowment The Quebec Branch Staff, Volunteers & Friends Endowment The Ken Raby Memorial Endowment The Kathryn & Gairey Richardson Family & Friends Endowment The Demetre & Elizabeth Sakoyannis Endowment The Hart Selbstaedt Memorial Fund The Dan Sparks Research Endowment The Sylvain Thibault Endowment The Robin Timmerman Endowment The Gavin Turley Scholarship Fund The Gord and Shelley White Endowment
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Contacts National and Branch Offices National Office 300-5165 Sherbrooke Street West Montreal, QC H4A 1T6 514-369-4806 / 1-800-361-7494 Paul Shay, National Executive Director
British Columbia Branch 4940 Canada Way, Suite 200 Burnaby, BC V5G 4K6 604-736-9775 / 1-800-567-8112 M.Y. Lorraine Gerard, Executive Director
Ontario Branch 1599 Hurontario Street, Suite 201 Mississauga, ON L5G 4S1 905-278-3003 / 1-800-387-4474 Jim O’Brien, Executive Director
Northern Alberta and The Territories Branch 202-11227 Jasper Avenue N.W. Edmonton, AB T5K 0L5 780-451-6900/ 1-800-461-9063 Heidi Erisman, Executive Director
Quebec Branch 2300 René-Lévesque Blvd. West Montreal, QC H3H 2R5 514-938-4515 / 1-800-565-4515 Martin Munger, Executive Director
Southern Alberta Branch 6007 1A Street SW Calgary, AB T2H 0G5 403-255-6108 / 1-800-268-1177 Joyce Van Deurzen, Executive Director
New Brunswick and Prince Edward Island Branch 42 Durelle Street, Suite 2 Fredericton, NB E3C 0G2 506-453-0533 / 1-877-453-0533 Tim Fox, Executive Director
Saskatchewan Branch 1-2217 Hanselman Court Saskatoon, SK S7L 6A8 306-664-8588 / 1-888-664-8588 Joyce Van Deurzen, Executive Director
Nova Scotia Branch 6960 Mumford Road, Suite 15 Halifax, NS B3L 4P1 902-429-9298 / 1-800-889-5557 Doris Cameron, Executive Director
Manitoba Branch Unit 1 - 452 Dovercourt Drive Winnipeg, MB R3Y 1G4 204-989-0800 / 1-800-729-7176 Valerie Dunphy, Executive Director
Newfoundland and Labrador Branch 10 Pippy Place, Suite 102 St. John’s, NL A1B 3X3 709-753-8999 / 1-800-563-0626 Nancy Hollett, Branch Manager
The Kidney Foundation of Canada’s audited financial statements are available online at www.kidney.ca, in the publications section. Charitable Registration Number: 10756 7398 RR0001
2010 National Board of Directors Back row, left to right: Will Osler, Alain Ouimet, Andrew MacRitchie, Gordon Read, Brad Crawford, Brian Donovan, Rick Pattee and Donn Pirie Middle row, left to right: Harvey Thomson, Riva Grinshpan, Dr. Julian Midgley, Glen Wilson, Rachael Kenny and Niloufer Bhesania Front row, left to right: Tetiana Gerych, Paul Shay, Kathryn Richardson and Faye Clark Absent: Claude Carter and Sheelah Zapf
National Board of Directors National President Kathryn Richardson Immediate Past President Niloufer Bhesania Treasurer Brad R. Crawford Secretary Riva Grinshpan Vice-Presidents Tetiana M. Gerych Dr. Julian Midgley
Directors Claude Carter, President, Nova Scotia Branch Faye Clark, President, New Brunswick and Prince Edward Island Branch Brian Donovan, President, Newfoundland and Labrador Branch Rachael Kenny, President, Saskatchewan Branch Andrew MacRitchie, Director-at-Large Will Osler, President, Southern Alberta Branch Alain Ouimet, President, Quebec Branch Rick Pattee, Director-at-Large Donn Pirie, President, Manitoba Branch Gordon Read, Director-at-Large Harvey Thomson, President, Ontario Branch Glen Wilson, President, British Columbia Branch Sheelah Zapf, President, Northern Alberta and The Territories Branch
Past Presidents 2006-2009: Niloufer Bhesania, ON 2004-2006: Patrice WachĂŠ, QC 2001-2004: Peter Davis, ON 1999-2001: Mary Lou Karley, ON 1997-1999: Marcia Bell, BC 1995-1997: Owen B. Brown, NL 1993-1995: Vivian Doyle-Kelly, QC 1991-1993: Mary Catharine McDonnell, NS 1989-1991: Neil Bronsch, AB 1988-1989: Alfred Coll, ON 1986-1988: Doris Norman, NB 1985-1986: Kenneth R. Hughes, MB 1983-1985: Howard McNutt, NS 1981-1983: Barry S. Arbus, ON 1979-1981: Stephen A. Stein, ON 1977-1979: Ben Vanden Brink, AB 1976-1977: David Ornstein, QC 1974-1976: Roger P. Kerans, AB 1970-1974: Harold Ashenmil, QC 1964-1970: Arthur Boidman, QC
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