The New Challenge Campaign by The Kidney Foundation

A FUTURE

WITHOUT

FAILURE

STRENGTH AND HOPE

The Kidney Foundation of Canada is determined to break through the barriers around kidney disease.

Much More Than Hope As a charity active across the country, we work in teams as well as autonomously to address the local realities of our community, and deliver excellent educational and research programs across Canada. The time has come, though, to take greater strides not just toward better treatments of kidney disease, but also toward its prevention and early detection. Now, armed with the knowledge and discoveries of nearly 50 years, we are tooled to ask better questions and to come up with wiser answers. We are, in fact, positioned to provide much more than hope. This campaign was fueled by the question: What else could we do if we dared National Executive Director, The Kidney Foundation

to ask for the help to do it? The answers we came up with were fourfold. We could foster early detection – possibly even prevention – of kidney disease. We could invest much more in research, and in doing so stimulate - in a collaborative fashion - even more support. For instance, we could invest more in building world-class research capacity in Canada through KRESCENT, the outstanding kidney researcher training program. We could power local and national initiatives that would lead to better programs and policies for our constituents according to the range of their needs. And ultimately, we could build our capacity at The Kidney Foundation to serve the needs of people living with kidney disease even more effectively and efficiently than we have in the past. These are bold goals, we’ve been cautioned. But caution is not what the New Challenge Campaign is about. Our constituents have already shown us that they are willing to knock on doors to raise funds and write parliamentarians to improve the organ donation system, so the will to power the progress is both present and actionable. What is more important today, is for each of us to reach out to our networks and ask for the support needed to be better at who we are. We invite you to join the challenge of asking for what is both possible and necessary. And we thank you for walking boldly forward with us.

Ties That Bind

Jaya Katwaroo Ashmi Katwaroo passed away from complications brought on by 13 years as a dialysis patient in November 2011. She was only 60 years old. Her death left her 23-year-old daugher Jaya without her greatest support in her own life-long battle with kidney problems.

Last year, Jaya Katwaroo walked in the local Kidney Foundation Walk to honour her mother’s long struggle with kidney disease. This year, she will walk to honour

her mother’s memory. Jaya is one of an estimated 2.6 million Canadians who have, or are at risk for, kidney disease. In most cases, the condition progresses slowly, often destroying most of a person’s renal function before causing any symptoms. There is no cure. If caught early, kidney disease may be controlled through diet and exercise. But once the kidneys fail, waste and fluids accumulate in the body, requiring dialysis or a kidney transplant to sustain life. Jaya was born with a third of one kidney and a non-functioning bladder. “My urine went into my bladder and would reflux into my kidney,” she explains. “By the time my mom gave birth, my right kidney had already failed because of the pressure of the refluxing urine.” Surgeons disconnected her right urethra – the channel that connects the kidney to the bladder – and redirected her left urethra out through her skin. But because of where the artificial opening for the urinary system was placed, Jaya was unable to use a bag to collect her urine. She wore diapers for 17 years. “When I came home crying after being teased at school, my mom always told me to be thankful for what I have. You have a kidney problem, but you have ten fingers and ten toes. You’re perfect. That mentality helped me stay positive,” says Jaya, whose personal motto is: “Illness is a state of mind.” In 2005, Jaya decided to undergo bladder reconstruction surgery. During the 12-hour operation, Dr. Darius Bägli built a new bladder using tissue from Jaya’s lower intestine and reconnected her urethra. For the first time in her life, Jaya was able to urinate normally, and wear panties. But the operation was not without risk. “My nephrologist warned me that I might end up on dialysis sooner than I thought, but I didn’t really listen,” says Jaya. “I was 17 and was wearing panties for the first time ever. I was on cloud nine.” Her kidney failed three years later, and after watching her mother endure hemodialysis treatment for almost a decade, Jaya suddenly found herself in the dialysis chair. “My mother held my hand as tight as she could through my entire first treatment and would not let go,” she remembers. PHOTO BRYN GLADDING

Jaya’s life as a carefree young woman was over.

Hemodialysis treatments made completing high school difficult, and led to isolation and depression. “I’m very sociable, so to go from having a lot of friends in high school to not having a social life was very difficult,” she comments.

Jaya and her sister Sara

Jaya had seen her mother’s health deteriorate rapidly due to a combination of diabetes, high blood pressure and renal failure, so she resolved to do whatever she could to maintain her quality of life.

“As soon as I started dialysis, I knew I had to take care of myself,” she says. “I talked to a dietitian about what I could eat. I asked my doctor if I could go to the gym and work out. I didn’t realize that as a dialysis patient I could still lead an active lifestyle.” Jaya had a fistula created to ease the insertion of the hemodialysis needles. The enlarged vein – which snakes around her right arm – is connected to an artery, allowing for increased blood flow. A year ago, she began inserting the needles herself, a first step in her journey towards home hemodialysis. For now, Jaya wakes up at 5:30 a.m. three days a week to make the journey to the renal care centre, located in a local strip mall. The three-hour treatments begin at seven, and leave her feeling physically and emotionally drained. “Dialysis is like running a marathon every other day,” she says. “You’re exhausted and very dehydrated afterwards. I get very bad migraine headaches.” But losing her mother to kidney disease has just strengthened Jaya’s desire to live the best life possible. She has a steadfast boyfriend who has stayed by her side through thick and thin, and she will become an aunt for the first time this spring. Jaya plans to begin home hemodialysis shortly and hopes it will help reestablish a more normal routine. At the moment, she is not on the waiting list for a kidney transplant. Although transplant success rates after 10 years are 90 per cent from a living donor, and 81 per cent from a deceased donor, Jaya knows a new kidney will not provide a permanent cure. Kidneys from living donors last on average between 15 to 20 years, while those from deceased donors typically last between 10 to 15. “I would need three to four kidneys in my lifespan. Is that realistic?” she asks. But she is not without hope. Jaya continues to share her family’s story at Kidney Foundation of Canada events in order to raise awareness about the disease and to encourage greater investment towards research that will lead to improved transplant outcomes and dialysis treatments – and enhance the quality of life – for kidney patients across Canada. “The Kidney Foundation has allowed me to get my story out there,” she says. “I’m 23 and I have kidney failure. And my mom battled kidney failure for 13 years caused by her diabetes and high blood pressure. Take care of your body. Take care of your loved ones. People don’t realize how quickly things can change.”

BY N ICOLE L A I DLER

the incomparable

Dr. “O” by Nicole Laidler

A PIONEER OF KIDNEY CARE. FOR MORE THAN 40 YEARS, THE UNIVERSITY OF TORONTO PROFESSOR OF MEDICINE AND RESEARCHER AT THE UNIVERSITY HEALTH NETWORK HAS BEEN COMMITTED TO IMPROVING THE LIVES OF PEOPLE LIVING WITH KIDNEY DISEASE.

During peritoneal dialysis, fluid continuously enters and leaves the body through a catheter in the abdomen. Dr. Oreopoulos has carried out extensive work in the field, mentoring hundreds of nephrologists from around the world and developing the Toronto Western Hospital technique for Continuous Ambulatory Peritoneal Dialysis (CAPD), which substantially decreased infection rates and increased the use of CAPD treatments worldwide. After joining Toronto Western Hospital in 1969, Dr. Oreopoulos has worked tirelessly to improve the lives of those suffering from kidney disease. He is internationally renowned for his advancements in peritoneal dialysis, advancements that reduce pain and infection. His development of a soft catheter has allowed more patients to receive treatment at home.

To honour his contributions to kidney research and patient care, members of the renal community and The Kidney Foundation of Canada, have joined forces to establish the Dr. Dimitrios Oreopoulos Prevention of Kidney Disease Award. The award will fund a broad spectrum of kidney research in Canada, including laboratory investigations, clinical trials, epidemiological, psychosocial and behavioural studies, and health care research. Dr. Oreopoulos’ lifelong dedication to advancing care for kidney patients has led to the development of revolutionary new dialysis treatments as well as an annual international conference in the Prevention of Renal Disease which has brought experts together to focus on this critical issue for more than 10 years. He was also instrumental in helping The Kidney Foundation of Canada establish its Ontario branch.

“The incidence of kidney disease in North America has reached epidemic proportions. Prevention should be the main goal of the nephrologist in the 21st Century.”

PHOTO BRYN GLADDING

DR. DIMITRIOS OREOPOULOS IS

“When I first came to Toronto, I was given the responsibility of a small unit with four beds, where patients would come to be treated with peritoneal dialysis,” he remembers. “These patients would wait very patiently until someone died in the hemodialysis unit so they could move there.”

BY HEATHER WRIGHT

Looking Ahead Looking Back

The 1950s and 1960s saw many turning points in kidney disease treatment. Hemodialysis machines were being refined and shown to prolong life for longer periods of time. Kidney transplants had been done, and some were even successful.

In 1958, Dr. John D. Dossetor coordinated a successful kidney transplant between identical twins at the Royal Victoria Hospital in Montreal, the first kidney transplant in the Commonwealth. But even he had to admit that in the 1960s “the level of ignorance of what was going on in the blood and in the kidneys of [those with kidney disease] was simply enormous.”

And the ignorance took its toll. In 1963 a young architect, Morty Tarder, was diagnosed with Goodpasture’s Syndrome. Today this syndrome is treatable, but in 1963, Dr. Dossetor had no treatments to offer. “When Morty died under my care at the Royal Victoria Hospital, his father, in grief and despair, said, ‘Can’t anything be done to prevent this sort of thing? In this day and age, surely someone can do something?’” Harry Tarder’s questions cut to the heart of Dr. Dossetor’s growing frustrations with the lack of available treatment and prevention tools. “For those with chronic renal failure, we had nothing to offer. [Harry’s] agonising statement haunted me, personally, and led to a resolve to try and do something about our impotence! I then got in touch with Dr. Guy Lemieux of Hopital Hotel Dieu in Montreal and we started talking about a foundation ….” Mr. Tarder turned to his friend Arthur (Ike) Boidman and asked for his help. Mr. Boidman, an influential Montreal businessman, helped recruit other doctors and interested individuals and became a founder of the national foundation. Mr. Boidman’s influence helped finance the early days of the foundation, and he personally paid The Kidney Foundation’s expenses when times were tough.

SURELY SOMEONE CAN DO SOMETHING?

PHOTO BRYN GLADDING

Dr. Dossetor and others in his field believed that “managing the end-stage of processes which destroy kidneys is tackling the problem from the wrong direction. What one really needed to do was to understand more about these processes, detect them early, and treat them effectively … Prevention, early detection and effective management could only come from a many-faceted research effort. We needed a research organization that would support such research.” From this conviction, The Kidney Foundation’s mandate was derived. The organization’s Letters Patent declare that the first charitable object of the foundation is “to support and encourage research into the incidence, causes, treatment, prevention and cure of all kidney diseases.”

Dr. George deVeber 8

The Foundation sought support across Canada, finding an eager recruit in Dr. Ashley Thomson, Manitoba’s Father of Nephrology. In 1954, with no artificial kidneys available to help his patients, he and a technician constructed Manitoba’s first dialysis machine. The use of dialysis on his patients with chronic renal failure had immediately positive results, but Dr. Thomson knew that kidney transplants were the key to his patients having a normal life. Accurate tissue typing was essential to the success of organ transplants that did not come from identical twins. He brought in a specialist, Hildegarde Jaggi from Switzerland, to train others in this technique and recruited a surgeon, Dr. Alan Downs. For Dr. Thomson, “the need for facilities, training in operating skills and treating patients are things that might slow you up, but they don’t necessarily have to stop you.”

couldn’t give them enough dialysis, they had a lot of psychological and emotional issues, and we felt that they really had to have some venue where they could get together to share their problems as well as having appropriate social psychiatric support.” “Mrs. Wagner suggested that we start a Kidney Foundation chapter here, which we did with the help of some of the more enthusiastic patients.” As kidney treatment units expanded into other hospitals, other chapters were formed, and eventually, The Kidney Foundation’s Ontario Branch office was formed to coordinate activities in the province.

When Dr. Thomson was asked to start a branch of The Kidney Foundation in Winnipeg, he said, “Sure. Anything I can do.” He talked to doctors and others about “what a kidney foundation could do to help achieve a reasonable number of transplants and manage the problems that individuals with chronic renal failure have with long-term dialysis use.” The Kidney Foundation’s support helped achieve Dr. Thomson’s hoped-for improvements in transplant and dialysis techniques. But Dr. Thomson sees those efforts as far from over. “More work needs to be done to improve the quality of life for those on dialysis, and to find out if there are hereditary issues and what can be done about it.”

In 1965, Nathan Dreskin’s article in MacLean’s Reports had this headline: WHY 500 WHO COULD SURVIVE WILL DIE IN ’65. In his article, he outlined the urgent need for more dialysis equipment and the technicians to operate it and described the Kidney Foundation’s urgent need for more research to combat “the silent killer.” Nearly 50 years later statistics tell their own story. The number of Canadians being treated for kidney failure has tripled over the past 20 years. Each day, an average of 16 people are told that their kidneys have failed. With 53% of new renal failure patients being 65 years of age or older, and millions of baby boomers approaching that age in the next 10 years, the strain on the system will be severe. Already, the need for organs outpaces the supply.

In the early 1960s in Ontario, the prospects for patients with chronic kidney failure were grim. Dr. George deVeber explains, “Up until 1962 anybody with chronic kidney failure was doomed to die. There were no truly chronic dialysis treatment programs available. Some hospitals had artificial kidneys, but their use was limited to patients with acute (reversible) kidney failure.” In 1962 Drs. Scribner and Quinton in Seattle devised an implantable vascular access system that could be safely used on a repetitive, long-term basis. This bypass system marked the start of chronic hemodialysis treatment programs.

Legacy Giving Society Estate gifts or bequests have always been an important and valued source of funding for the Kidney Foundation. In 2011, the Kidney Foundation of Canada established a new Legacy Giving Society to recognize and honour individuals who have included the Kidney Foundation in their estate plans. Making a planned gift to a charity you believe in is an extremely personal decision - and one that can have tremendous impact. “We simply have to ensure that advances continue. That is why I intend to include The Kidney Foundation of Canada in my Will. My bequest is a simple, yet immensely powerful way to extend my life’s work far beyond my own career.” John B. Dossetor, OC, BM BCh (Oxon:), FRCPC, Ph D. (McGill), Professor Emeritus (Medicine/Bioethics, U/Alberta) and Founding member of The Kidney Foundation’s Legacy Giving Society

If you would like to find out more about joining the Kidney Foundations Legacy Giving Society by making a gift in your will, please contact Susan McKenzie at smckenzie@kidney.on.ca or 1-800-387-4474 ext. 4960. www.kidney.ca/planned-giving

In 1965, Dr. deVeber joined the staff of Toronto Western Hospital after three years of training at Methodist Hospital in Houston, Texas. He had worked with Dr. Robert Morgen to set up the first dialysis and transplantation unit in that state. Toronto Western was the first hospital in Ontario to develop a similar program. “At that time we could only treat a small number of patients. We had many patients with chronic kidney failure, so we created a nonpartisan committee to choose which people could have treatment. This was very difficult, and in the end, the decision was often made by the doctors because they were the only ones who knew the patients very well.”

Dr. John D. Dossetor

“I am glad someone had the courage, or stubbornness, or whatever it took, to say that something had to be done to try to save people who were dying from kidney failure – and I am proud my family played a role in realizing status quo simply wasn’t good enough. The same can be said today. If we can keep that passion and momentum going, I know we can accomplish even more.”

Transplants were also being done, but as Dr. deVeber explains, “In the early days, transplants from deceased donors only had about a fifty percent, oneyear success rate. There were issues with tissue matching and the toxicity of the medications to prevent rejection.” Even if these issues had been solved, said deVeber, “there would never have been enough donors.” The Kidney Foundation arranged to have a donor card portion as part of the Ontario driver’s licence in 1972, but it has never been as widely used as was hoped. Dr. deVeber adds, “There is still a critical shortage donors today.” For Dr. deVeber, his association with The Kidney Foundation came about through his secretary. Mrs. Gerde Wagner had been Dr. Dossetor’s secretary in Montreal, and she had been very involved in starting the first Kidney Foundation chapter at the Royal Victoria Hospital. “Then she came to Toronto and worked for me,” said Dr. DeVeber. “By that time we had realized that our patients were really in a tough situation: they didn’t feel well, we

The same sense of urgency that inspired the founders continues to be felt by The Kidney Foundation. Research and development of new treatments and technologies - and early diagnosis - are critical to ensure a future for the increasing numbers who will be diagnosed with kidney disease in the next 20 years. With so many at risk, standing still is not an option. To find out how you can help, visit kidneycampaign.ca

John Boidman

In 1991, The Kidney Foundation of Canada created the Founder’s Award Campaign to raise funds to fight kidney disease and honour the hopes and vision of Founding President, Arthur “Ike” Boidman. Since 2008, John Boidman’s efforts, as part of the Founder’s Award Campaign Cabinet in the Quebec Branch, have helped continue the important work his great uncle started in 1964.

STORIES OF

Linni Xu

FAILURE

AND HOPE by Nicole Laidler

When kidney disease strikes one person, it affects their entire family – often their community. No one knows this better than 17-year-old Ike Zhang, whose mother Linni Xu was diagnosed with renal failure in 2003.

Rebuilding family life after a diagnosis “When we found out that my mom needed dialysis, we were in shock. We never expected it to happen so soon,” says the teenager. “Dialysis is not a short-term thing, and we weren’t prepared.” It was a rude awakening for Linni, whose Asian ethnicity placed her at risk for kidney disease, and whose job as a computer consultant had her travelling across North America more than 300 days each year. “I think I was too tired and too busy,” she says. “At first we started off like any family. We were stressed, depressed and emotional,” remembers Ike. “But then we realized it was a situation that we had to deal with. We needed to make dialysis part of our lifestyle.” Ike’s father found a job that could accommodate his wife’s dialysis schedule. Linni now works for a different company and is no longer required to travel.

After watching his own family struggle to cope with his mother’s diagnosis, Ike was inspired to organize a concert to raise awareness and funds for The Kidney Foundation of Canada. The evening featured members of the Chinese Orchestra and brought in more than $7,000. “We try to defeat the mentality that kidney disease is a burden in your life,” says Ike, who is currently building a website with tips for home hemodialysis patients. “We just try to live with it and do everything anyone else would do.”

Ike Zhang

PHOTO BRYN GLADDING

The family decided to pursue home hemodialysis in 2007, which allows Linni to complete her dialysis treatments at home with the help of her husband and son. She has also been on the kidney transplant waiting list for five years.

Lauren Herschel ONE KIDNEY, FOUR TRANSPLANTS

Darren Martin SAVED BY A MOOSE

Lauren Herschel understands how much quality of life – and extra time – means for a family with a critically ill loved one. Her father was diagnosed with cancer when she was in her late teens, and passed away after a three-year battle.

For most people, hitting a moose is fatal. For Darren Martin, it just may have saved his life.

So when Lauren discovered Canada’s Living Donor Paired Exchange (LDPE) kidney transplant program, she knew it was something she wanted to be a part of. The LDPE – which operates as a partnership between Canadian Blood Services and transplant programs across the country – facilitates living kidney donations between patients with a willing but incompatible donor and other pairs in the same situation.

Susan Jacks A HERO IN THE FAMILY

Lauren contacted The Kidney Foundation of Canada to ask about joining the registry as a non-directed donor. She was referred to the Living Donor Services – Southern Alberta Transplant Program at Calgary’s Foothills Medical Centre and after undergoing tests to ensure she was a suitable candidate, made her donation on June 7, 2011. Lauren’s kidney triggered four transplants through the LDPE program.

Jason Sheath FROM SURVIVING TO THRIVING In May 2003, Jason Sheath was playing in an international rugby tournament. Six weeks later, he was sitting in a nephrologist’s office in Kamloops BC. He had lost more than 80 per cent of his kidney function. Sheath was suffering from an inflammatory kidney disease called IgA nephropathy, also known as Berger’s disease, which causes the kidneys to leak blood into the urine. “I did the usual cycle of someone who is young. I kind of rebelled,” he says. “They put me on a limited diet and watched me.” His health continued to deteriorate. After a severe migraine headache left

Canadian singer-songwriter Susan Jacks knows all about the anxiety of finding an organ donor match. First diagnosed with kidney problems in 2004, Susan’s renal function declined rapidly during the summer of 2009, and by August doctors wanted to fit her with a fistula so she could begin dialysis.

him paralyzed down one side in 2005, Sheath was diagnosed with end-stage

“Dialysis can keep you alive, but it’s debilitating,” says The Poppy Family lead singer. “I wanted to give myself the best chance.” For Susan, that meant waiting to see if any of her family members were a living donor match. “It’s a very frightening position to be put in. You’re in limbo, praying that something happens.”

The stress and depression brought on by dialysis caused Sheath to lose his

In February 2010 Susan received a kidney transplant from her brother Billy. “Because of my brother, I’m here and healthy, and able to do what I love, which is sing,” says Susan.

wait for a transplant, which might or might not help me.”

Susan is now using her voice to support The Kidney Foundation of Canada and to encourage others to consider kidney donation, either as a non-directed living donor, or as a deceased donor. While the number of Canadians living with kidney failure has tripled over the past 20 years, organ donation rates have remained stagnant. “When you face your own mortality and are given a second chance, it changes your whole perspective,” she comments. “I know so many people who are waiting, and they deserve a second chance too.” Susan shares her story wherever she performs, and has already organized several concerts to raise funds for The Kidney Foundation of Canada. “I take my brother with me everywhere I can,” she says. “He’s my hero. He saved my life.”

kidney disease and told that he might not survive the night. “The life that I had built was wiped away with one diagnosis,” says Sheath, whose pre-diagnosis passions included rugby, scuba diving, and travel.

business, and his marriage. “I wound up moving back into my dad’s mobile home. I was poor and sick and 31 years old. And they were telling me that it would be a seven or eight year

Sheath struggled with feelings of despair, until an uncle suggested a return to school.

Blood work revealed that Darren was in renal failure. “My potassium levels were so high that my heart could have stopped, and my hemoglobin was so low that the doctors couldn’t believe I had walked to the hospital,” he says. He was immediately sent to Saint John to start emergency dialysis through a temporary access site in his neck. “I was terrified,” says Darren. With no dialysis unit in Fredericton, the 18-yearold spent eight weeks in the St. John hospital. After considering his treatment options, Darren decided to begin peritoneal dialysis, where dialysis fluid is flushed into the abdomen through a permanent catheter. He deferred college and moved back home with his parents. “Living with my parents and being on peritoneal dialysis was hard on me. I was depressed. I missed my independence, and the 800 calories a day from the dialysis solution coupled with a lack of energy to exercise made me gain quite a bit of weight,” says Darren. When a new hemodialysis unit opened in Fredericton in 2000, Darren decided to move back and finish his studies. “I loved the idea of leaving my dialysis at the unit. I felt like life was back on track.” He was newly-married and had a job that he loved. The only thing missing was a new kidney. With none of his family members a match, Darren simply had to wait for a donor organ to become available. More than four years after his car accident, Darren finally got the phone call he had been waiting for. “I’ve had my transplant for almost nine years and am very blessed not to have had any complications,” says Darren, who remains friends with his ‘kidney mate’ Phyllis. “We received kidneys from the same donor,” Darren explains. “She’s a wonderful lady, and remains a big part of my life.”

Today, Sheath is in his second year of law school at the University of Alberta. He is the recipient of the faculty’s Honourable Cecilia Johnstone Adversity Award, and The Kidney Foundation of Canada – Northern Alberta’s Paddlers for Parts “The surgery hasn’t really impacted my life,” says Lauren, who went back to work after two weeks and has “next to no scars” thanks to the laparoscopic procedure. Although Lauren hasn’t had the opportunity to meet the recipient of her kidney due to Canadian privacy laws, she has met many people whose lives are affected by kidney disease through Kidney Foundation initiatives such as Calgary’s 100 km Kidney March. “It was moving to hear their stories,” she says. “It helped me picture the person I had donated my kidney to, and how it might have changed their life.” Read more about Lauren’s experiences as a non-directed living kidney donor on her blog: tomakeachoice.blogspot.com

Darren was travelling from Perth-Andover to Fredericton, NB, when the car he was riding in hit a moose. Although he wasn’t injured, Darren’s parents convinced him to visit a doctor; he’d been feeling run-down for weeks.

Bursary, which helps individuals living with kidney disease, dialysis or kidney

Darren and his wife Andrea

transplant pursue their education. Remarried with a seven-year-old stepson, Sheath shares his story at speaking engagements with The Kidney Foundation of Canada in Edmonton. Concerned about the long-term health effects of anti-rejection drugs, his desire for a kidney transplant is “on hold.” For now, he prefers nocturnal home hemodialysis. “I’m trying to maintain an equilibrium,” he explains. “Being at home helps me maintain hope about my situation. I don’t think about the path that I’m on, or whether I’ll make it. It’s very hard to maintain a positive outlook on the dialysis ward.”

Dr. Katalin Szaszi

RESEARCH WITH RESULTS KRESCENT

Dr. Michael Walsh

“I’ve been frustrated that we don’t have the robust evidence to guide treatments for kidney diseases that we need to help patients make informed decisions. Support from The Kidney Foundation through KRESCENT is helping me identify which treatments best reduce the occurrence of kidney disease and improve the health of patients that have the disease.” Dr. Michael Walsh is a nephrologist and Clinician Scientist at McMaster University and St. Joseph’s Health Care in Hamilton, Ontario. He earned his medical degree, internal medicine residency, nephrology fellowship and Master’s degree in Clinical Epidemiology in Calgary, after which he undertook a research fellowship in lupus nephritis and vasculitis at the University of Cambridge (UK). He is now pursuing a PhD in Health Research Methodology while conducting large clinical trials in kidney diseases. KRESCENT Post Doctoral Fellowship 2006 - 2009 KRESCENT New Investigator Award 2011 - 2014

PHOTO BRYN GLADDING

“KRESCENT provided the outstanding intellectual environment and financial support that were key to establishing my research program.”

Dr. Katalin Szaszi is a Scientist at the Keenan Research Centre of the Li Ka Shing Knowledge Institute of St. Michael’s Hospital in Toronto. Her research examines how kidney cells are altered by inflammation knowledge that will help design better targets for therapy and diagnosis. KRESCENT New Investigator Award 2007 - 2010 KFOC Biomedical Research Grant 2009 - 2011

Year after year, the internationallyreputed KRESCENT program supports the strongest kidney research trainees in Canada, as determined by a panel of Canada’s top kidney researchers. We are proud to have launched the careers of our nation’s brightest, up-and-coming researchers, providing crucial funding from which they have leveraged additional funding and are building world-renowned research programs.

KRESCENT – Creating a Community of Researchers to Impact Patient Care Launched in 2005, the Kidney Research Scientist Core Education and National Training Program (KRESCENT) was designed to expand kidney research scientist training in Canada and facilitate knowledge transfer from the bench or laboratory setting to the patient’s bedside. A unique collaboration between its three founding partners, The Kidney Foundation of Canada, The Canadian Society of Nephrology and the Canadian Institutes of Health Research, the program was also designed to train the next generation of research leaders.

We help people achieve healthy skin.

And these are individuals demonstrating success at getting positions at universities in Canada,” reports Dr. Burns. “About 80% of trainees have secured positions and peer-reviewed grant support. The success rate is roughly 50% so far - much higher than one would see in the traditional peer review funding environment right now which is close to 20-25%.”

remarks Dr. Burns, “who’s working on something called ‘endothelial micro-

According to Dr. Burns, the most important aspect of the program’s success is the actual quality of the research, with major publications resulting in a variety of areas. Diabetic kidney disease, acute kidney injury and the mechanisms of glomerulonephritis (inflammation of kidney filters than can lead to renal failure) are basic science areas that have a significant impact on patients. The clinical research component has also seen major publications. Clinical trials on vasculitis (blood vessel inflammation) and its treatment have already resulted from the KRESCENT Program.

kidney disease and other forms of chronic

particles’ which are thought to be produced when high blood pressure causes injury to blood vessels. Dr. Burger is a laboratory PhD scientist. But because of KRESCENT, he started a collaboration with Dr. Navdeep Tangri – another KRESCENT fellow, and they’re now working

“KRESCENT encourages people to work outside the box, outside their own discipline.”

LEO Pharma Inc is proud to partner with The Kidney Foundation of Canada in the management of chronic kidney disease.

together to look at patients with diabetic kidney disease to see whether these microparticles are generated in these patients. Their work together will generate knowledge that could help people with this disease.” “Creating a community of researchers is key,” says Dr. Burns, and the KRESCENT Program provides a non-silo model for successfully translating laboratory setting knowledge to practical care for patients. “I would say the KRESCENT program is unique,”

he notes. “There is really no other training program in Canada or elsewhere that I am aware of that applies this approach of taking all disciplines of research, putting them together, having a curriculum, having participants understand

And there has been remarkable progress in translational research: because of KRESCENT, individuals who do basic science are now collaborating with clinical researchers to take their science and move it to the patient’s bedside.

and appreciate other types of research disciplines and then encouraging

“There’s an Ottawa-based KRESCENT post-doctoral fellow, Dylan Burger,”

training along these lines.”

collaboration. Having said that, there is now interest from other countries, and other specialties within Canada, who have approached us about starting

Dr. Kevin Burns and KRESCENT Researcher Dr. Sunny Hartwig in Canada who would be knowledgeable across many disciplines of research. There are four silos that are applicable to all research, including kidney. These are biomedical, clinical, health services and population health research. The researcher’s goal, explains Dr. Kevin Burns, “is to take biomedical knowledge and move it across these silos so that it impacts the care of individuals.”

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The KRESCENT program benefits from corporate sector funding as well as the involvement of provincial funding agencies and private donors. “It’s really a very broad collaboration,” says Dr. Burns, and the program’s structure also fosters cross-country team building. “We’re trying to encourage people to work outside the box, outside their own discipline. For instance, a laboratory scientist working on something can collaborate with a clinical researcher who can then move this basic knowledge to the point where it can benefit the patient. I think that there’s a demand from the public for us to take this knowledge and move it more quickly and effectively as teams.” Three groups of researchers are particularly targeted by the KRESCENT program: allied health doctoral awardees (of which there is a shortage in Canada), post-doctoral fellows who are finishing their training in nephrology or as PhD scientists, and new investigators who are individuals in their first three years of academic appointment. “These are individuals who are vulnerable, partly because of their workload,” explains Dr. Burns, “They need to have time protected for research, an environment that supports research.” In addition to salary support, the program features a curriculum delivered to the trainees, with additional workshops that allow participants to work on very specific problems, fostering the exchange of insights and information. Now in its eighth year, the program has a strong roster of success. “In terms of capacity, we’ve already trained more than 40 kidney research scientists.

NATALIE A Blue Tie Evening with Natalie Cole

One of the special initiatives taking place across the country, as part of the New Challenge Campaign, is a one-evening spectacular performance. Natalie Cole brings her amazing story and exceptional talents to Toronto’s Westin Harbour Castle, in an exclusive concert to benefit The Kidney Foundation of Canada.

FOR MORE INFORMATION SEE

www.kidney.ca/natalie 19

Susan McKenzie

RESEARCH

Game Changers BY HE AT HER WRIGH T

When Dr. Dossetor, The Kidney Foundation’s co-founder, first became involved in the field of

“Science sometimes feels like it takes a really, really long time,” says Dr. Deborah Zimmerman, Clinical Investigator at The Ottawa Hospital. “In 1860 Thomas Graham coined

nephrology in the 1960s, it was very young. He

the phrase ‘dialysis’, but it wasn’t until about 1913 that

recalls that not many doctors were interested in

Abel and his colleagues were able to dialyze the first

entering the field because there wasn’t much that could be done for kidney patients.

animals. Another decade passed before we actually had the first attempts – unfortunately, unsuccessful – to dialyze people.”

Science may have been slow but it has resulted in some landmark moments for the treatment of kidney disease. Here are

Marian Reich

a few of those moments that transformed the quality of life and hopes of those with kidney disease and a look ahead at what the future may hold.

EARLY SUCCESS WITH TRANSPLANTS

In 1958 Dr. John D. Dossetor coordinated a team at the Royal Victoria Hospital in Montreal for the first kidney

transplant in the Commonwealth. The transplant between identical twins was a success. The ability to eventually successfully transplant kidneys from non-related or diseased donors was borne from refined tissue matching technologies and the development of effective immunosuppressive drug therapies. In the late 1970s, Dr. Calvin Stiller organized the first North American clinical trial of the immunosuppressant drug cyclosporine in kidney transplantation, which led to its world-wide adoption.

THE IMPLANTIBLE VASCULAR ACCESS SYSTEM

In 1962, Drs. Scribner and Quinton in Seattle designed a shunt that created a permanent external access to the

bloodstream. This design allowed for long-term dialysis that had been impossible until then because of the need to find

PHOTO BRYN GLADDING

new access points for each treatment. Life sustaining dialysis became an option for a wider number of patients.

“In 2010, I was given the gift of new life. I am acutely aware that thirty years of research into new treatments and prevention afforded me chances my father and grandfather never had. There are no words to thank my sister-in-law, Marian, who gave so much so I could have another chance at life. I won’t waste this incredible gift. It is time to act.” Susan McKenzie is now the Senior Director of Development at The Kidney Foundation of Canada.

A Gift of Life On April 24th 1979, I was granted the gift of life. 33 years, 396 months, 12,052 days, 289,272 hours and counting...

HORMONE TREATMENT Life for those with kidney failure used to depend upon frequent blood transfusions to restore hemoglobin levels that dropped with the kidney’s diminishing ability to produce erythropoietin, the hormone that stimulates the production of red blood cells. “When you think about quality of life in the present era,” says Dr. Deborah Zimmerman, “it was probably the introduction in the 1980s of treatment with drug equivalents of erythropoietin (EPO) that has had the most profound effect on physical function.”

ANGIOTENSIN BLOCKERS ACE inhibitors are now standard therapy, but Dr. Kevin Burns sees the understanding of these inhibitors as, “one of the breakthroughs in understanding the area of kidney diseases in which individuals have proteinuria (protein loss in the urine). It’s well understood now that drugs called ACE inhibitors can effectively reduce the progression of kidney disease.”

Future game changers are in laboratories now. WEARABLE DIALYZER Dr. Zimmerman notes, “Researchers are working on membrane technology and talking about a wearable dialyzer. You’d actually be able to wear it and continue to do your everyday activities while you were dialyzing. And I believe it will happen during my career.”

STEM CELL RESEARCH

A wife, 2 daughters, a family, friends, a business and a community. It’s a lot to be mindful of, and grateful for. On behalf of the recipients of kidney transplants, thank you to the donors, their families, the researchers, the doctors, the nursers and the caregivers. Best Wishes to The Kidney Foundation of Canada on their first National Campaign.

AL G. BROWN

ASSOCIATES

This ad is generously sponsored by Al G. Brown and Associates and Families 22

Dr. Lori West, Director of Heart Transplant Research at the University of Alberta, says, “The ability to transplant organs safely without the need for lifelong immunosuppressive drugs would be a major advance for patient care. These studies could potentially be translated relatively rapidly into cohorts in Canada. Many Canadian researchers have been involved in tolerance research already and could easily investigate adoption of similar approaches. If these results are sustained and can be reproduced in larger numbers of patients, including recipients of organs other than kidneys, there will be substantial benefits in terms of decreased patient morbidity and decreased costs of transplantation.” This also implies more effective use of donated organs. Further studies will need to confirm that the tolerant state is truly stable and will not be perturbed by episodes of infection and similar events.

GENETIC RESEARCH “Provoking nature is a third way,” explains Dr. Burns. “We’ve been working on transgenic models in animals. We activate the gene in animals so it produces more of a certain enzyme in the kidney and our data suggests that by doing this, one can actually lessen diabetic kidney disease or decrease diabetic kidney disease.” Current research into stem cell treatment, the wearable dialyzer and other therapies are proving promising in both Canada and elsewhere. The next two decades have the potential to transform the treatment, prevention and early detection of kidney disease.

University of Louisville and the Northwestern Memorial Hospital in Chicago,

But these two decades will be costly.

involved eight patients who received transplants from live donors. After the

By supporting the New Challenge Campaign, you can help us support gamechanging research that could transform the future for kidney patients. You can help us transform lives. Visit kidneycampaign.ca

recipients’ immune systems were suppressed, the transplants were done and their bodies were given the donors’ stem cells a couple of days later.

A MEANINGFUL GIFT These sterling silver pendants and lapel pins are exclusively available through The Kidney Foundation of Canada.

David Wm. Brown Transplant recipient 1979

Stem cell research is another game changer. A recent study, carried out at the

The patients began with anti-rejection drugs and then slowly withdrew from them. Five of the eight managed to be drug free in one year.

To find out more about these hand-made, custom-designed items or to place an order for yourself or a friend, visit our online store at kidney.ca/store.

kidney.ca/store 23

Jason Kroft, Kidney Foundation donor and Ontario Chair of the Campaign

We’ve Come A Long Way In 50 Years. Just imagine what an even greater investment could do. In the early days of the Foundation, people diagnosed with kidney disease had little hope of survival. Our donors believed that their investments in research and patient support and services could change things. It has. And it can. Over the last 50 years, The Kidney Foundation has supported thousands of kidney patients and their families through patient support programs and services and raised more than $100 million to support life-saving kidney research across Canada. But, as anyone who has been personally affected can attest, prevention and treatment methods can still be vastly improved; with the incidence of kidney failure increasing year after year in Canada, there is an urgent need to do more. That is why today we are boldly embarking on our first-ever nation-wide campaign, the New Challenge Campaign, to raise more money than ever before, focusing on the following four priorities : 1) Kidney research, including the KRESCENT researcher training program, 2) kidney health, focusing on early detection and targeted screening 3) Innovative patient services, organ donation awareness and public policy 4) Strengthening The Kidney Foundation’s capacity to better meet the needs of kidney patients and their families. Underpinning this new direction is a commitment to expand our fund development capacity through a major unified Campaign. This is unprecedented in The Kidney Foundation’s history. Through the New Challenge Campaign, we will engage donors in meaningful opportunities to raise funds and elevate the public’s understanding of kidney disease as a major health issue.

PHOTO BRYN GLADDING

Jason Kroft is a living example of how donations, and a half-century of research, have changed lives. Diagnosed with a malfunctioning kidney as a toddler, Jason’s doctors made every effort to delay the progression of the disease through diet, medication, and a variety of experimental treatments. By the time Jason reached his second year of law school, his kidneys were failing, and on September 12, 2000, he received an organ transplant from his mother.

Today, the 40 year old is a corporate law partner in the Toronto office of Stikeman Elliott, the father of two young daughters, and the Ontario Chair of The Kidney Foundation of Canada’s New Challenge Campaign. He has been recognized by Lexpert as a Leading Lawyer Under 40 as well as in The Best Lawyers in Canada 2012 and The 2012 Guide to the Leading 500 Lawyers in Canada.

by Nicole Laidler

“The Kidney Foundation is at the core of research firsts in Canada, and I am a tremendous beneficiary of that research. I’m here because of the advancements in techniques and medications,” says Jason. “I imagine that every kidney patient in the country has had their life improved in some way by The Foundation.”

The Not-So-Easy Chair

To support other kidney patients and their families during the time of transplant, Jason helped launch The Kidney Foundation’s nation-wide campaign by establishing the Jason Kroft and Family Fund with a personal donation of $50,000. With an aging population and rates of diabetes and high blood pressure on the rise, Jason says the increased risk of kidney disease to Canadians is significant. “It will become a real crisis without a national response.” Jason’s passion is echoed in the words of another transplant recipient and Kidney Foundation of Canada champion, Michel Perron. “I am sure that if I hadn’t received the precious gift of a transplanted kidney I would have had to stop working and my life would be very different,” says Michel, who turns 80 in April. The Quebec businessman began dialysis at Montreal’s Royal Victoria Hospital in 1992. At the time, people over 60 were considered ineligible for transplant, but with his son’s kidney available, surgeons agreed to go ahead with the lifechanging procedure. Michel was back at work eight days later. He celebrated his 62nd birthday and the first anniversary of his transplant by raising The Kidney Foundation of Canada flag at the North Pole in 1994. At his wife’s suggestion, he used the adventure to raise money for the Foundation by establishing the Michel Perron Research Fund. “On my return I learned that we had raised $250,000,” he says. Thanks to Michel’s ongoing involvement, the fund continues to grow and provide support for research projects across the country. In addition, Michel has raised a total of $2.7 million over the last 17 years as a member of the Foundation’s Founder’s Award Campaign Cabinet.

His exceptional support for The Kidney Foundation of Canada was recognized with the Foundation’s Mission Award – Organ Donation and the Order of Canada in 1996. With his kidney working well 19 years after transplant, Michel makes regular visits to dialysis patients in his community. “I bear the responsibility of giving hope to dialyzed patients and of encouraging them to undergo a kidney transplant, by way of my own testimony,” says the father of seven, and grandfather of 22. “Donating a kidney today is much easier than it used to be for both the donor and the Michel Perron recipient. The technology for transplant and dialysis is much better,” he comments. “I am very fortunate to be almost 80, thanks to the gift of my son’s kidney.” The Pedersens are another family whose lives have been touched by kidney disease. Kurt – a Vice President, Investment Advisor with the Macquarie Group – and his wife, Liz, decided the most effective way to impact the future for those with kidney disease was by investing in research. The Calgary couple began by organizing an event to celebrate their 40th birthdays, which raised $120,790 thanks to the generous support of friends, family and colleagues; an additional $61,390 was raised during a Stampede party. The Macquarie Group Foundation – one of Australia’s oldest and largest corporate benefactors - matched the Pedersens’ contribution for a total of $364,360. Kurt and Liz approached The Kidney Foundation of Canada to establish an award to support research relevant to Alport’s Syndrome, an inherited disease of the

March To A Different Drummer Kidney disease is irreversible, and each year it kills thousands of Canadians. These numbers are growing. Some of the brave heroes and heroines that make up the Kidney March are directly affected by kidney disease. Some have family members or friends that are. Others are simply advocating for a cause the believe is worth fighting for.

kidneycampaign.ca

Walk. Three days. 100 kilometres. Through the grandeur of the Rocky Mountains. Raise $2,200 for the fight against kidney disease and meet some of the most inspiring people on the planet.

Every day 16 Canadians are diagnosed with kidney disease. 2.6 million Canadians are suffering from, or at risk of, kidney failure. Without dialysis or a transplant, patients with renal failure will die.

This September, make the biggest difference you’ve ever made in your life.

Research and early detection will help make this chair a thing of the past. Join us in the Challenge.

Take the first step, visit www.kidneymarch.ca

kidney that is estimated to effect one in 50,000 people. While dialysis and transplant techniques have improved, the need for those treatments continues to rise. The number of Canadians living with kidney failure has tripled over the past 20 years, and each day an additional 16 people learn their kidneys have failed.

Pave Set Bands in 18K White, Rose and Yellow Gold

Members of certain ethnic backgrounds are at particular risk, including people of Asian, South Asian, Pacific Island, African/Caribbean, Hispanic and Aboriginal origin. In Manitoba, rates of kidney disease among Aboriginal populations is reaching epidemic proportions; in 2011 more than 40 per cent of all new cases of people with end stage renal disease in the province were Aboriginal. To improve prevention and early detection, The Kidney Foundation Manitoba Branch has developed a community-based kidney curriculum for First Nations school children, thanks to the generous support of RBC Financial Group. “Our Children, Their Health, Our Future,” is a culturally-appropriate health education curriculum that teaches children about maintaining their physical health through exercise and informed food choices. These principles are strengthened through lessons that incorporate First Nations traditions, beliefs, and diet.

Natural Colour Diamonds

The curriculum launched at Kistiganwacheeng Elementary School in Garden Hill, Manitoba in 2007, and has since been introduced to school children at Fisher River Cree Nation and most recently at Peguis First Nation.

416-234-1600 Toll Free: 1-888-561-8880

“At RBC, we believe it is important to build relationships with Aboriginal peoples based on mutual understanding and partnership, and with a deep respect for cultural identities, values and beliefs of all Aboriginal communities,” says Matt Simeoni, RBC’s vice president Aboriginal markets. “It is only through working together that we can strengthen communities, which is why we are very proud to support this program.” By working closely with community Elders, the curriculum reflects the unique culture of each First Nation, adds Manitoba Branch Executive Director, Val Dunphy. “It will lead to generational change that will be slow, but effective,” she says. The ultimate goal is to make the program available to school children throughout the province. David Yochlowitz of British Columbia is also committed to helping The Kidney Foundation of Canada promote the prevention and early detection of renal disease. The CEO of ABC Recycling donated a kidney to his wife 10 years ago and has been involved with the Foundation ever since. When Yochlowitz saw an opportunity for The Kidney Foundation to expand its successful Kidney Car fundraising program to include other types of scrap metal, Kidney Metals was born. One of the first companies to be inspired by the possibilities was CN. In April 2011, CN announced three-year funding of $600,000 for a national targeted screening program through the donation and recycling of out-of-service railway cars. “Their pledge will allow Kidney Foundation branches across the country to offer free screenings,” says Kidney Foundation of Canada BC Branch Director of Development, Pia Schindler. Early detection is critical, since the vast majority of people at risk of renal failure show no symptoms until the disease is quite advanced. “We know that kidney failure could have been prevented or delayed in nearly half of patients currently being treated with dialysis or kidney transplantation,” she says.

Proudly supports the Kidney Foundation simex-iwerks.com

Despite the focus on prevention and early detection in recent years, kidney disease still strikes people of all ages. That’s why Winston Boone, who became a dedicated Kidney Foundation supporter after receiving a kidney transplant 17

29 KF_ad_quarter_page.indd 1

3/16/2012 11:39:39 AM

years ago, felt compelled to support the Kidney Camp for Kids at Nova Scotia’s Brigadoon Village. The facility, opened in 2011, provides fun and safe camp experiences for children living with kidney disease and other chronic illnesses, Boone explains. As the retired president of Boone Food Services Ltd., which operates 25 A&W Restaurants in New Brunswick and Nova Scotia, Boone rallied his fellow maritime A&W operators to support the Kidney Camp project.

“Diet is one of the only things that an individual can do to take back some control of their treatment,” comments Nadine Valk, National Director of Programs and Public Policy for The Kidney Foundation of Canada. The website provides reliable nutritional information, dietician-approved kidney-friendly recipes, meal planners, tips for eating out, and an online forum for people to share stories and ideas. A team of volunteer dieticians is also on hand to answer questions and review submitted recipes.

“When kids have to deal with their illness, they’re often not able to spend time with their peers,” he comments. “This will give them the opportunity to have fun and get their mind off their kidney disease.”

“This website takes the guesswork out of making kidney-friendly food choices,” comments Saskatchewan nephrologist Dr. Joanne Kappel. “It will have such a positive impact on people living with kidney disease.”

Exercise and making better lifestyle choices can play an important role in maintaining kidney health, but a properly-managed diet is absolutely critical for people already living with renal disease.

We want to do more. Join us in the challenge

While there is no standard renal diet, kidney patients must restrict their sodium, potassium and phosphorus intake, and monitor their consumption of proteins and fluids. It can be a daunting and time-consuming task that can make eating a daily struggle. James MacOwen Andrews had trouble managing his diet in the later years of his life after his kidneys failed. Thanks to his generous bequest, The Kidney Foundation of Canada was able to develop a bilingual website designed to ease the burden of living with a kidney disease diet. The Kidney Community Kitchen (www.kidneycommunitykitchen.ca) launched in November 2011, and has attracted a global following.

Jason Kroft knows many people consider him a medical miracle. If he had been born a generation earlier, his childhood kidney disease would have undoubtedly been fatal. “Fifty years ago people with kidney disease died. We’ve come a long way. So where can we get in the next 50?” he asks. The Kidney Foundation of Canada carries out tremendous work in the areas of research, prevention and patient services, he notes, but more work still needs to be done. “Dialysis isn’t a cure. Transplant isn’t a cure. These are first steps, hopefully, toward eradicating this disease completely. There has never been a more important time to focus on kidney disease and we all need to be engaged to make the changes needed.”

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Brave is stronger than

big.

We are inspired by the people we help, like the men and women who struggle with chronic renal failure. We are pleased to support the Kidney Foundation of Canada in the pursuit of its mission in addition to being the partner of their Kidney Stories of Hope awareness campaign. We wish the Foundation much success with The New Challenge Campaign. Shire Canada Inc. is a biopharmaceutical company with Canadian headquarters located in Montreal. We are a proud member of the Rx&D association and take pride in contributing to the vitality of the pharmaceutical industry in Quebec and elsewhere in the country. Visit us via our website at www.shirecanada.com.

Shire Canada Inc. 2250, boul. Alfred-Nobel suite 500 Saint-Laurent (QuĂŠbec) H4S 2C9 514 787-2300 www.shirecanada.com

To be as brave as the people we help.