Kidney Living Spring 2016

Living

KIDNEY Spring 2016 Volume 9 • Number 1

www.kidney.ca/ontario

A PUBLICATION OF THE ONTARIO BRANCH

Scientists and patients work together for improved lives

Sp ec ial R Iss ese ue arc h

RESEARCH

contents

SPRING 2016

THE FOUNDATION OF KIDNEY CARE/FUNDRAISING 3 Editor’s Message: A Healthy Dose of Hope 4 Research 6 KRESCENT 7 Remembering and Inspiring 12 Kidney Research Matters

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MEDICAL RESEARCH 5 Life as a new investigator 8 Meet Dr. Victor Jensen 9 Clinician scientist’s research informed by his work with patients 10 Energy Budgeting 11 Who gets what?

14 Windsor Clinical trial seeks evidence to support optimal dose of medication for dialysis patients

15 Meet Dr. Amit Garg 16 Meet Dr. Chris Kennedy 17 Hypertension 18 Restoring balance in kidney donations 19 Clinical Research 20 Kidney Research: Past, present and future 21 Patient engagement helps set new research priorities Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses t o Tr i s h R e y n o l d s , C o m m u n i c a t i o n s Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:communications@kidney.on.ca.

Phone:1-800-387-4474.

©2016. Kidney Living, the contents of which is subject to copyright, is published twice a year.

Reproduction in whole or in part, in written, electronic or any other format, without prior written permission, is strictly prohibited. For more information, contact Trish Reynolds, Editor at treynolds@kidney.on.ca or 1-800-387-4474 Ext. 4981.

The appearance of advertising in Kidney Living does not imply an endorsement by The Kidney Foundation of Canada, nor guarantee the quality, effectiveness of any products or services.

Editing, design and printing by GEPM Group Inc. www.gepmgroup.com

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Cover photo credit: BigStockPhoto.com/65199013

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THE FOUNDATION OF KIDNEY CARE

A Healthy Dose of Hope “There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” ~ Orison Swett Marden , American Author

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e are a society that wants instantaneous results, whether it’s texting a friend and hoping for a reply immediately or expecting the construction that hampers your daily commute to be completed in a few short days. We want to see progress and results and we want to see it now. Unlike construction or a text message, there still are some things in life that take time. Medical research, by its very nature, doesn’t happen overnight. It can take years of work both at the lab, and later in the clinical setting to see results put into practice.

While it might seem that progress is slow, we’ve made tremendous strides in the treatment of kidney failure over the last 50 years. Research has led to the development and improvement of dialysis treatment.

Not only is treatment accessible by everyone, but people can choose different types of dialysis that best fit their needs and lifestyles. It has made transplantation the treatment of choice for an increasing number of patients, and has led to the development of the anti-rejection drugs that have made kidney transplants so successful.

Canada is home to a vibrant kidney research community and The Kidney Foundation is an important partner investing millions in peerreviewed research projects, as well as investing the future of renal research through the KRESCENT program. Through this special research issue of Kidney Living, we will introduce you to some of the dedicated researchers across Canada who currently receive grant support from The Kidney Foundation. We often think of research as something that is beyond our understanding, but we’ve worked hard to demystify some of the research that is taking place in labs across the country and provide a glimpse of just a few of the projects currently in development.

It has been said that research is one of our greatest patient services.

Indeed the work that is being done today will most certainly impact the care of kidney patients tomorrow. Research after all is hope, and hope is a medicine, we are all willing to take.

Enjoy  Trish Reynolds, Editor Communications Manager The Kidney Foundation of Canada, Ontario Branch

www.kidney.ca/ontario

The Kidney Foundation of Canada, Ontario Branch 2015 – 2016 Board of Directors

Executive Greg Robbins, President Terry Young, Past President Ken Mylrea, Treasurer Directors at Large Roza Berkowitz Niloufer Bhesania Debbie Hodgins Craig Kerr June Martin Dr. Judith Miller Shirley Pulkkinen Susan Storey Harvey Thomson Susan Tkachuk Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 Spring 2016 / Kidney Living /

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THE FOUNDATION OF KIDNEY CARE

Research At the root of The Kidney Foundation since 1964

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he Kidney Foundation of Canada is proud to be one of the major funders of kidney-related research in Canada and has a strong history of promoting research. In fact, The Kidney Foundation was founded in 1964 by the family of Morty Tarder, a young Montreal architect who died of kidney disease. Their goal was to raise money for research to help better understand the disease. By 1973, the Foundation was able to provide its first grants to researchers.

Since that time, The Kidney Foundation has supported research into all aspects of kidney health, disease and treatment by providing Canadian researchers with more than $110,000,000 in grants.

Today, The Kidney Foundation funds about $4 million per year in research through a number of programs: the Biomedical Research Grants competition; a world-class training program (The Kidney Research Scientist Core Education and National Training Program or “KRESCENT”); and a grant program for Allied Health researchers. In addition, The Kidney Foundation partners with many other players in the field to fund research into Alport Syndrome, Kidney Cancer and others.

Research offers hope to people living with kidney disease: for improved treatments and

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understanding of their condition, for fewer side effects of medications they may need to take, for increasing organ donation, for discovering genetic causes of kidney disease, and much more. Every day, kidney researchers go to their clinics, their labs, or their offices and work with one goal in mind: to learn more about kidney disease and to how make life better for those living with the condition.

I have had the pleasure of meeting many of these individuals and I am always impressed by their dedication, their commitment and their caring.

It is also an exciting time in research as one of the biggest trends in research is the attempt to involve patients and those with lived experience with a disease in research programs. The major Canadian funder of health research in Canada— the Canadian Institutes of Health Research or CIHR—has launched a “Strategy for PatientOriented Research” (SPOR). SPOR engages patients as partners, focuses on patient-identified priorities and works to improve patient outcomes. The Kidney Foundation of Canada and the Canadian kidney research community have embraced the tenets of SPOR and now work closely with patients. If you are interested in becoming more involved in research, please do not hesitate to contact me to talk about options and opportunities.

This truly is an exciting time in the world of kidney research and we are very fortunate that there is a dedicated group of people working tirelessly for those with kidney disease.  Elisabeth Fowler National Director of Research Elisabeth.Fowler@kidney.ca

www.kidney.ca/ontario

MEDICAL RESEARCH

Life as a new investigator

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by Dr. Darren Bridgewater

remember being an eager thirdyear undergraduate student, walking through the corridors of Children’s Hospital of Western Ontario with my supervisor Dr. Matsell, a pediatric nephrologist, to see one of his patients with congenital kidney disease. Dr. Matsell explained that the patient’s kidneys had not developed properly, resulting in poor function and the need for dialysis. When I asked him why their kidneys failed to develop properly, he simply responded with a slight nod and frown that implied he did not know. At this moment, it clicked. I grasped the clinical impact of the kidney research I was conducting as a summer student. This defining moment has not only helped motivate me through my Ph.D. and post-doctoral fellowship but remains a touchstone for me as an independent investigator.

When I first started my laboratory, I was fortunate to share lab space with more established researchers and quickly learned to adopt the mantra of “beg, borrow and steal” with an abundance of apologies and IOUs. In retrospect, integrating my lab with more established laboratories was fundamental to successful startup. Another crucial early practice was hiring the right research personnel who had the ability to work independently with a high degree of self-motivation, as the majority of my time was dedicated to developing my teaching curriculums, teaching and writing grants.

The excitement of buying new equipment and reagents, hiring personal, maintaining transgenic mice, and performing experiments quickly turned to a sense of urgency as the invoices started rolling in and my start-up funds were quickly dwindling. Having had no luck in winning the lottery and realizing I had www.kidney.ca/ontario

no choice but to pay these invoices, I jumped head first into the anxiety-provoking, stomachchurning process of writing grants. After my first grant was riddled with red marker by internal review, it was clear I had to develop my grant-writing skills. I learned that identifying the right mentors and colleagues who cared about my success and would provide constructive feedback, no matter how painful, was the key to writing effective grants. With a newly-found writing plan, experienced internal reviewers, and a smidgen of confidence, I applied for seven grants in my first year, and was awarded none. However, the reviewers’ comments from the granting agencies suggested a level of interest and enthusiasm for my research, especially those from The Kidney Foundation of Canada. With some positive reviews in hand, a little hope, guidance from mentors and dedicated research staff, we addressed all the reviewers’ concerns, and in my second grant cycle, I finally received my first grant. Then second. Then third. Then fourth—most for modest amounts of money and for short duration. But at last, I had achieved grant success instrumental for career progression, and most importantly, this allowed me to further my research to generate foundational knowledge toward a cure for congenital kidney disease. I am indebted to the Hamilton Health Sciences New Investigator program, Bickell Foundation, NSERC and The Kidney Foundation of Canada for their support for me as a new investigator.

Sadly, the gratification of grant success is too short lived. With funding in hand and productive graduate students settling in, publishing became the next top priority. Again, the cycle of rejections and revisions reared its ugly head and led me to question my research abilities as Spring 2016 / Kidney Living /

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a new investigator. However, my lab members’ persistence, combined with input from my colleagues, helped me realize this was part of the normal process for a new investigator in getting published.

In addition to research, my role at McMaster also includes a heavy teaching component.

This article would not be complete without recognizing the challenges I have faced as a new investigator, including balancing colleagues’ expectations, performing numerous tasks for which I received no formal training, and most importantly achieving a work-life harmony. As the new kid on the block, the number of requests from colleagues to undertake academic responsibilities overwhelmed me. In addition, as a new investigator I found myself consistently performing tasks I was not familiar with. For example, I was exercising my accounting skills by budgeting my research program; I was a human resources manager when hiring and letting go of employees and addressing their concerns; and I was a negotiator when patiently communicating with administration and employees. Moreover, I was in perpetual catch 22, where I was feeling guilty by not spending time with my family, yet also guilty for not being at work. Once again, I relied on the advice of my more established colleagues. During this process, I learned some of the most valuable lessons that were paramount to maintaining my sanity. I learned to respectfully decline offers, I prioritized tasks that were going to be most beneficial to my career goals, and most importantly, I recognized the need to cultivate outlets outside of the academic bubble to relieve stress. These changes in my attitude helped me become more productive at work, with less stress guilt, making the career much more enjoyable.

For me, the first four and half years as a new investigator have been riddled with incredible challenges that ultimately reaped incredible rewards. I have now completed the tenure and promotion processes, secured long-term CIHR funding, my laboratory is publishing regularly in the field of understanding kidney disease, and the teaching curriculums are established. But none of this would have been possible without relying on colleagues in the field with similar experiences and surrounding myself with individuals with similar career goals. And, the most important for me is to have outlets that you can always look to for motivation through the continuing challenges inherent to this career.  To learn more about Dr. Bridgewater’s research, visit www.kidney.ca/ dbridgewater. © Darren Bridgewater Source: Bridgewater, D. (2015). Life as a new investigator. Canadian Journal of Kidney Health and Disease, 2 (47). doi : HYPERLINK “http://cjkhd.biomedcentral.com/articles/10.1186/s40697015-0083-4” 10.1186/s40697-015-0083-4 This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/ ).

Edits made to the original article.

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or 10 years, the KRESCENT program has supported the strongest kidney research trainees in Canada. The Kidney Research Scientist Core Education and National Training Program (KRESCENT) launched in 2005, is a collaboration of The Kidney Foundation of Canada, The Canadian Society of Nephrology and the Canadian Institutes of Health Research (CIHR).

KRESCENT is focused on the recruitment and training of world-class kidney scientists who will become research leaders in kidney research in Canada. It is a unique program in three key ways: • it recruits trainees from multiple disciplines for involvement in a national curriculum; • it supports career development at the doctoral level (Allied Health), post-doctoral level and in the period following the candidate’s first faculty appointment, with ongoing mentorship support; • and it fosters the development of collaborative research and knowledge translation across research themes.

In addition to salary support, the program features a curriculum delivered to the trainees and a built-in mentoring system that helps to facilitate career development.

Fifty-six trainees have graduated from KRESCENT. A 10-year evaluation of the program is underway and the early results are very encouraging indicating a high rate of success for researchers and Fellows who have completed the training.  “I would say the KRESCENT program is unique. 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 appreciate other types of research disciplines and then encouraging collaboration. Having said that, there is now interest from other countries, and other specialties within Canada, who have approached us about starting training along those lines.” ~ Dr. Kevin Burns, KRESCENT Program Director, A Future Without Failure New Challenge Campaign magazine (2012) www.kidney.ca/ontario

THE FOUNDATION OF KIDNEY CARE

Remembering and Inspiring

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$25,000 KRESCENT Award in Honour of the Late Dr. Jerry Posen

e was a family man, a friend, an inspiring mentor, and a distinguished nephrologist with progressive contributions and accomplishments— dedicated to improving the care and health of Canadians with kidney disease. To continue his legacy of work, fellow nephrologists from the Division of Nephrology and University of Ottawa donated $25,000 for a KRESCENT Award to recognize and honour the work of the late Dr. Jerry Posen, MD, FRCP (1935 – 2015).

“The goal of KRESCENT is to train and mentor new researchers who will work on the prevention of the disease and improvement of the health of those living with kidney disease,” said presenter and friend, Dr. Peter Magner, Head of the Division of Nephrology at the Ottawa Hospital and University of Ottawa. Speaking on behalf of his nephrology colleagues and generous donors, “this grant will be awarded in honour of the late Dr. Posen as the Dr. Jerry Posen Memorial Krescent Award.”

Dr. Peter Magner and Mrs. Josee Posen www.kidney.ca/ontario

Dr. Jerry Posen

Mrs. Josee Posen embraces the commemorative Krescent Award plaque honouring her late husband. Photo by: PKTreus

The $25,000 donation was accepted at the 2015 Transplant Celebration Evening hosted by The Kidney Foundation of Canada, Eastern Ontario Chapter. The KRESCENT program, under its director Dr. Kevin Burns, has funded the training of young researchers for the last 10 years. It is a collaboration of The Kidney Foundation of Canada, the Canadian Society of Nephrology, and the Canadian Institutes of Health Research.

An artistic commemorative plaque was created for Dr. Posen—designed around a special rock selected from the site of the Royal Victoria Hospital in Montreal, and the home of the first successful kidney transplant in 1958. Mrs. Josee Posen accepted the plaque on behalf of her late husband with these words, “My husband placed a high value on clinical research to improve the care of kidney patients, and he strongly believed in the need to support and nurture younger physician investigators. He would have been delighted and honoured by the generosity of his nephrology colleagues in establishing this award to further those objectives. On his behalf, my family and I are deeply grateful to the nephrologists of the Division of Nephrology and University of Ottawa, and to The Kidney Foundation of Canada for their support in making it possible.”  Submitted as a collaboration by the committee of the 2015 Transplant Celebration The Kidney Foundation of Canada, Eastern Ontario Chapter.

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Meet Dr. Victor Jensen KRESCENT Post-Doctoral Fellow

Dr. Victor Jensen

by Elisabeth Fowler

Reprinted from The Kidney Chronicles

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ictor knew he wanted to be a molecular biologist since he was a kid because he has always been fascinated with understanding how life works. This fascination has led him to work with genes, proteins, and… worms. Specifically, the small hairs (called ‘cilia’) found in the nose of worms. Cilia are extremely important to biology and can be found on almost every cell in the human body.

The cilia act as antennae for our cells and they allow the cell to know what is going on around it. “We use cilia to see, to hear, smell and to push mucous out of our lungs. In the kidney the cilia are used to detect urine flow and they help the body know when the kidney is finished developing.” Disturbances or damage to the cilia can lead to diseases such as polycystic kidney disease (PKD) or disorders such as Joubert syndrome that include kidney dysfunction.

Victor studies cilia-related genes to learn how mutation of the genes impacts health and disease. In particular, “We want to know how basic biochemistry of cilia relate to rare genetic diseases.” In the lab, Victor will study several genes from the roughly 20,000 in worms to determine if the associated proteins function in cilia. If they turn out to be at cilia, then they make mutants for them. (A mutant in this case is not a zombie, but rather it is a worm that is missing the gene that they are studying.) Once they have created a mutant worm, they run a battery of tests on the worm to see if they can figure out the function of the protein to predict its’ impact on human health. Victor’s lab recently – in conjunction with other labs

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– found a gene that is linked to a rare genetic disease called Joubert syndrome. People with Joubert syndrome have developmental disabilities accompanied by severe kidney disease and often require dialysis and/or transplantation.

Because his team was able to help identify this specific gene as causative in Joubert syndrome, a genetic test is now available to determine if someone is a carrier for the mutant copy of the gene. There is now hope to eradicate the disease completely by using this knowledge.

If you are wondering why Victor works on worms instead of looking for genes in humans, he explains that it is faster to both find and discover the function of cilia genes in worms.

For example, it takes only one month to study a worm strain (it would take two years to do the same in mice). In addition, he explains that worms share most of the same cilia proteins with humans. “So if we find a protein that messes up the cilia in worms, it is likely that it will do the same thing in humans.”

Victor also has a personal reason for wanting to know how the kidney works as his wife was recently diagnosed with PKD. Together, Victor and his wife have three children and since PKD is a dominant genetic disease, they know that it is quite likely that one or two of their children will also have PKD. Victor feels that his work may help other families by discovering what genes may contribute to disorders that affect them.

Victor is very grateful for the funding he has received from The Kidney Foundation through the KRESCENT program. With the peace of mind that comes from 3 years of funding, Victor can focus on discovering more cilia components.  www.kidney.ca/ontario

MEDICAL RESEARCH

Clinician scientist’s research informed by his work with patients

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Dr. Darren Yuen, Clinician Scientist, Toronto

by Heidi Westfield

“If I didn’t have [the KFOC grant],” he says, “I wouldn’t be here right now.”

www.kidney.ca/ontario

n the heart of downtown Toronto is St. Michael’s Hospital, one of the oldest and busiest healthcare centres in the city. Just across the street, connected by a pedestrian bridge, is the Li Ka Shing Knowledge Institute.

Even though just steps away, the worlds of scientific research and patient care can sometimes feel very far apart. “There is a gap between scientists in the lab and clinicians in the hospital,” said Dr. Darren Yuen, a Toronto-based nephrologist. “Scientists don’t easily have the ability to study people who have disease. Doctors see all the disease but they don’t have all the tools to try to solve the problems they see on an everyday basis.”

Working at his clinic, Dr. Yuen grew frustrated with the options he had available for his kidney patients. He felt there were many persistent questions about kidney disease that remained unanswered.

“I realized that, while we have made great strides over the past 20 or 30 years, we have only really scratched the surface,” Dr. Yuen noted.

“We have limited options for diagnosing and treating patients. You know something is wrong, but you don’t know how bad it is, and what to do about it.”

So he decided to pursue extra training to become a clinician scientist.

It is a hybrid role—part doctor, part researcher—that is hailed by the Royal College of Physicians and Surgeons as “critical for driving health care innovation in Canada.”

While their role has become increasingly important, the College says there are relatively few clinician scientists in this country. Dr. Yuen attributes that to a weak economy that has limited funds available for research, and the daunting amount of training involved to earn the designation. He became a clinician scientist only after 18 years of postsecondary education. His wife likes to joke about how long it took him to get his “first job.”

Now Dr. Yuen sees patients at the nephrology clinic at St. Michael’s Hospital, and conducts research projects across the street. Many of the questions he tackles in his scientific investigations are directly informed by the issues brought to his attention at the hospital. He credits the support of his colleagues at St. Michael’s Hospital for enabling him to dedicate much of his time to the lab. The Kidney Foundation of Canada has also played a vital role in launching his research work. The Kidney Foundation gave Dr. Yuen his first grant in 2013, enabling him to set up his lab. Grants from organizations like The Kidney Foundation, he says, are essential to keeping scientific studies afloat. “If I didn’t have it,” he Spring 2016 / Kidney Living /

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says, “I wouldn’t be here right now.”

Dr. Yuen is now overseeing two research projects, both with the potential to provide substantial leaps forward in patient care.

Building on that initial grant from The Kidney Foundation in 2013, his team has now received more than a million dollars in funding to find new ways to assess kidney damage. It involves looking at Magnetic Resonance Imaging (MRI) as a way to take detailed pictures of kidney scarring. The diagnostic tool used now, the biopsy, can be invasive and provides only limited information. It is hoped that doctors will be able to use MRI to gain a better understanding of the extent of kidney damage in their patients.

The second project, funded in part by The Kidney Foundation of Canada, is aimed at preventing loss of kidney function in people with Type 1 diabetes. Early on in the disease, extra blood vessels grow in the kidneys, eventually damaging the organs. His team is investigating ways to stop those vessels from growing, to prevent the damage from happening. Ultimately, they would like to learn not just how to stop those extra blood vessels from growing, but also how stimulate their growth to repair kidneys that are already damaged.

The most rewarding part of his research work, Dr. Yuen says, is the positive impact it can have for people with kidney disease. As a clinician scientist, he has the opportunity to open new channels of understanding, and help unravel the mysteries around a disease that affects one in 10 Canadians. 

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Energy Budgeting

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Is there a way to help people with kidney disease feel less tired?

by Janine Farragher

am privileged to be an occupational therapist who does kidney disease research. In this role I have been able to learn about life with kidney disease from patients and their families. I am also able to work on new treatments that I hope will improve the well-being of people living with this illness.

One of the things I have learned through my work, is that fatigue is very common and bothersome to people who have kidney disease. Patients often say that their fatigue prevents them from living life the way they want to. Occupational therapy is about finding ways to help people with health problems do things they want or need to do. These could be activities for work, taking care of yourself, or activities for enjoyment. Because fatigue often prevents kidney disease patients from doing these things, my research is testing a new treatment for managing fatigue in people with kidney disease called “energy conservation,” or “energy budgeting.”

Most people have some idea of what budgeting means when we talk about money. Good budgeting involves saving money whenever it is possible, and spending it only on things that are really important. With energy budgeting, people who get tired easily are taught to spend and save their energy well while they are doing their daily activities. This gives them more energy left over to do things they really want or need to do.

“Energy budgeting” strategies could include scheduling more resting breaks into the day; using energy-saving tools (such as grocery buggies); choosing not to do activities that are not necessary or enjoyable; or asking for more help from family or friends. Research shows that when people with conditions such as multiple sclerosis are trained to use these strategies, they can feel better and experience less fatigue. I am exploring whether patients on dialysis could also experience benefits if they are taught about energy budgeting. I also want to learn from patients what they think about energy budgeting, and whether they believe it could be a useful treatment for them. My hope is that people with kidney disease be taught these skills as a part of learning about their disease and its treatment.

I have been fortunate to have received funding from The Kidney Foundation of Canada for this research—first through a two-year Allied Health Doctoral Fellowship, and now as a participant of the KRESCENT (Kidney Research Scientist Core Education and National Training) program. The KRESCENT program has allowed me to meet other kidney researchers, learn about the latest research in the field of kidney disease, receive feedback about my own work, and develop my skills as a scientist. I am very grateful for these opportunities afforded to me by The Kidney Foundation of Canada. I look forward to continuing to engage in new and exciting research about kidney disease which I hope will help improve the lives of patients and their families!  www.kidney.ca/ontario

MEDICAL RESEARCH

Who gets what?

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How does The Kidney Foundation determine what research projects receive funding?

Kidney researchers are volunteers!

he Kidney Foundation’s review procedure for assessing research applications is rigorous. Each year, researchers have the opportunity to apply for Kidney Foundation funding through the KRESCENT, Biomedical and Allied Health research competitions. Grant applications are evaluate by volunteers from the health care and scientific community, all of whom are recognized leaders in their field. Committee members then review and rank each application.

Three types of funding:

Operating Grants provide financial support to researchers. The money is used for the salaries of support personnel such as technicians and statisticians, and to purchase supplies and equipment.

Fellowships provide salary support for the KRESCENT trainees and to Allied Health professionals such as dietitians, nurses, social workers and transplant coordinators who are pursuing doctoral degrees that focus on kidney diseases as well as on patients suffering from them.

Scholarships support outstanding Allied Health professionals who are in a master’s program. 

The research department could not function without the generous help of the kidney research community who donate significant amounts of their time and energy to The Kidney Foundation.

Last year, over 65 Canadian kidney researchers donated over 2,670 hours to The Kidney Foundation’s research department. They provide expert peer reviews, advice and information to us on a regular basis. In addition, kidney researchers help the Foundation choose the Medal of Research Excellence recipient and a number of them sit on The Kidney Foundation’s Research Council.

Total Grants Awarded 2015-2016 Allied Health Research Grants, $250,848.00

KRESCENT, $1,060,000.00

Transplantation Research, $50,000.00

Biomedical Research Grants, $1,842,343.00

Strategic Research, $138,028.00

Total KRESCENT Awards by Program 2015-2016 $75,000.00 $505,000.00 $480,000.00

“Of his involvement with The Kidney Foundation’s National Research Program, Dr. Clark says the Foundation’s research model is an excellent one.

“Researchers compete with their peers for funding to do original research they are driving. So the program funds the best researchers doing the best and often most innovative research. Really innovative research often, but not always, requires time and a certain distance to achieve a major breakthrough.”

Dr. William Clark Co-Chair Kidney Foundation Research Council 50 Kidney Stories 2014

Krescent Post Doctoral Fellowship Krescent New Investigator Award Krescent Infrastructure Support

www.kidney.ca/ontario

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THE FOUNDATION OF KIDNEY CARE

Kidney Research Matters Our patients and volunteers share why they feel it’s important to support kidney research

I know when I was sick, all I wanted was to feel better again, and dialysis was going to help with that but my levels straightened out and I was lucky enough to have an eager donor waiting to give me a kidney. I am fascinated by the fact that in my lifetime dialysis has gone from a new and experimental treatment, not necessarily open to everyone, to being available to anyone from infants to 100-year-olds. Dialysis works, and it’s improving all the time.

I believe research is the key to helping people like me face down kidney disease, and not just keep going, but be healthy enough to lead an active life, and have the opportunity to give back to my community.

When people ask me how donating to The Kidney Foundation can help their communities, I use myself as an example: “I am still here.”

Mary Diemer - Windsor

Kidney research funding provided by The Kidney Foundation is important to help doctors and scientists do research in preventing end stage renal failure and find new treatments to improve the health of patients affected by kidney diseases.

Research information and advancements have helped me to do dialysis at home and have given me the flexibility to enjoy a good quality of life. The various information sessions and pamphlets I received in the pre-dialysis stage of my kidney disease have helped me to understand and manage my kidney disease.

Edward Kan, Milton

Kidney disease research helps patients like Dawson to live a healthy and normal life despite the challenges that go along with having chronic kidney disease.

Bettina Iraci, Ottawa

Your Sup Makes a Dif

General Donations

Door to Door

Kidne

The Kidney Foundation is the foremost Canadian charity supportin improved the lives of thousands of Canadians living with kidney disea of this is possible without you. You have been an active supporter of your su 12 / Kidney Living / Spring 2016

www.kidney.ca/ontario

THE FOUNDATION OF KIDNEY CARE

“You have kidney disease. Over time, your kidney function will continue to decrease until they fail.

You will need to be on a dialysis machine to sustain life. There is nothing you did to cause it, and nothing you can do to stop it. Hopefully, you might be a candidate for a transplant.”

My head spinning with equal parts dread and denial, I had no idea how lucky I was. But I do now. As early as about 60 years ago that same conversation would have been a lot shorter, with much scarier words like “I regret to inform you...” and “Last Will and Testament.” Today that conversation goes on to discuss dialysis options and an ever-increasing pool of compatible donors no longer limited to close relatives. Stem cells, implantable artificial organs, 3-D printing, organ cloning and new drugs are just a few of the headlines I see from time to time, offering hope to those living with kidney disease. I’m one of the lucky ones—almost two years after my wife gave me her kidney and I haven’t had a problem thus far.

Without research none of this would be possible. But research doesn’t just happen by itself. It takes a lot of dedicated, hard-working, smart people to make it happen. Without the money raised by The Kidney Foundation to fund ongoing research, my wife would be a widow, my kids without a father. I can’t begin to express how grateful my family and I are. My story isn’t unique, there are too many families facing the same challenges we have. Living with kidney disease isn’t easy, but The Kidney Foundation provides services to people to help them meet those challenges head on, such as peer support, education and information, pre-dialysis screening, treatment options and so on. By working together and pooling our resources we can offer better day-to-day living for people living with kidney disease.

Richard Bernreiter, Thunder Bay

pport fference!

ey Walk

Kidney Clothes

Kidney Car

ng kidney research, investing over $110 million in research that has ase. We support the best kidney research all across Canada, but none f kidney research through your annual contributions. Thank you for upport! www.kidney.ca/ontario

I believe that research is the number one and single most important program/ service that The Kidney Foundation of Canada funds and offers in order to live its vision of “kidney health, and improved lives for all people affected by kidney disease.” In my view, no other investment can possibly have as widespread a reach as research does, in that all Canadians, from coast to coast, may be impacted by its benefits. That impact may translate into something different for different people, but in the end, the importance of each advancement is very significant.

Without the benefits of research, my family wouldn’t have been able to celebrate the 20th anniversary of a successful kidney transplant last year. Surgical techniques, anti-rejection medications, follow-up routines and protocols, etc., are all based on best practices that arise from knowledge and information gained from research. Some of the practices were basically unheard of 10-20 years ago, but have become the standard of care. That, to me, demonstrates more of the benefits of research.

Susan Tkachuk, Ancaster Life with kidney disease and being on dialysis was a time of loss and alienation from friends.

Loss of health, freedom, capacity to work, travel and enjoy the things that made life rich.

Research into kidney disease has meant there is hope for a future and the knowledge that people care enough to contribute to finding a cure. Knowing you’re not alone makes all the difference.

The cause of my kidney disease was always a mystery until the last few years. Through research the cause was discovered to be an antibody that was attacking my kidney. Further research suggested this antibody could be successfully treated with an existing drug. Without this level of understanding I would not have been able to keep my transplant and enjoy the wonderful life I have today.

Brian MacLaren, Mississauga

Spring 2016 / Kidney Living /

13

MEDICAL RESEARCH

Windsor Clinical trial seeks evidence to support optimal dose of medication for dialysis patients

D

One in 10 Canadians will develop kidney disease during their lifetime.

by Jennifer Breese

“We owe it to patients to provide them with the proper care that they deserve.”

espite this troubling fact, kidney disease does not always receive a lot of publicity or attention. Research into treatment for this condition also receives less consideration and funding than other chronic illnesses such as cancer or heart disease, but is just as important.

Fortunately, there are dedicated Canadian scientists researching ways to best diagnose and treat those living with kidney disease. One such group is Dr. El-Masri from the University of Windsor and his colleagues at Windsor Regional Hospital, who are working to establish a way to resolve blood clots that block the vascular catheters of kidney dialysis patients.

When a person with chronic kidney disease reaches Stage 5, they are in renal failure and must begin dialysis. For those on hemodialysis, the preferred method of administering the treatment is through a surgically implanted access known as a fistula. Sometimes when a person isn’t a good candidate for a fistula, a catheter is used instead. The drawback of catheters, however, is that they have a high risk of becoming blocked due to clot formation at the catheter site. When this happens, patients are given a drug called Alteplase to dissolve these clots, but there is no official agreement on the proper dosage for this drug. Some professionals believe that one milligram of the drug is enough, while others believe two milligrams is the proper dosage. This debate became a research project for a medical intern who worked under the supervision of Dr. El-Masri and his colleagues on a retrospective cohort study to examine this issue. Although the study was published in a peer-reviewed journal, Dr. El-Masri and his team were convinced that to provide the best answer to this research question, they needed to replicate the study using a much more rigorous study design such as a randomized controlled trial.

There are no hard and fast guidelines for the

14 / Kidney Living / Spring 2016

optimum dosage of the drug. The correct or optimum dosage can be described as the level where drugs will work with the best outcomes and least risk to patients. Finding the correct medication dosage is a critical issue. Not only does giving too much of medicine increase the risk of possible side effects, it also wastes healthcare funds; while receiving an insufficient dosage could mean the medication is not providing effective treatment.

After publishing the original findings, the team developed a proposal for a clinical trial and sought funding which they received through an Allied Health Research Grant from The Kidney Foundation of Canada. Once the necessary ethics approvals were received, the study began a little over a year ago. Now in the data collection stage, Dr. El-Masri says that the research will provide nephrologists and clinical pharmacists with evidence pertaining to the right dose to give; rather than relying on just a hunch.” When attempting to deliver the best, most effective care to dialysis patients, Dr. El-Masri says, “We cannot afford to waste time dealing with a blocked catheter.”

Dr. El-Masri believes that the value of research funding provided by The Kidney Foundation has a huge impact for the scientific community and patients. He is grateful for the funding his team received.

“This study wouldn’t be possible without it,” he says. “It helps provide the best possible patient outcomes. We owe it to patients to provide them with the proper care that they deserve.”

Once the study is finished, Dr. El-Masri and his team will continue to search for ways to improve the quality of care for people with kidney disease.

“Research is an important element of patient care,” Dr. El-Masri points out. “We should be invested as a country in kidney disease research.

All chronic illness is serious illness. Just like heart disease and cancer, we need to be invested in taking care of kidney patients.”  www.kidney.ca/ontario

MEDICAL RESEARCH

Meet Dr. Amit Garg Western University, London, Ontario

Where are you from? Where did you study?

I was born and raised in Sudbury, Ontario. I completed my undergraduate studies at the University of Western Ontario and I graduated from the University of Toronto Medical School in 1995. I also completed a Masters of Education at U of T. I did my Internal Medicine Residency at McMaster University and a Nephrology Fellowship at Western University. I also completed a Ph.D. in Clinical Epidemiology and Biostatistics at McMaster. In 2003, I joined the Faculty at Western University, where I also began practicing nephrology as a consultant.

How did you become interested in nephrology?

There is a tremendous spirit of collaboration and teamwork

I became interested in nephrology during my internal medicine residency. I found caring for renal patients challenging and rewarding. I felt there was an opportunity to make a contribution to clinical knowledge in nephrology through research.

What are you currently researching?

I am currently conducting research to generate and translate new knowledge to safely increase the number of living donor kidney transplants and to improve the experiences and outcomes of donors and their recipients. A diverse group of stakeholders (patients, clinicians, researchers, and health administrators) has shaped the direction and objectives of the research I am undertaking.

I am also completing studies to inform better drug prescribing in patients with kidney disease or at risk of kidney injury. Some of our prior studies in this area have identified unsafe drug prescribing that has led to label changes by Health Canada and the US Food and Drug Administration What word would you use to describe the kidney research community in Canada? Why?

“Collaborative.” I have had the good fortune of conducting research with over 100 renal investigators across Canada. There is a tremendous spirit of collaboration and teamwork, where we work together to generate and implement new knowledge to health care, patient outcomes and health policy.

What does the grant support from The Kidney Foundation mean to you?

Research requires time, energy, good ideas and money. Grant support from The Kidney Foundation of Canada is critical. Without it, it would be impossible to make useful and important new discoveries.  www.kidney.ca/ontario

Spring 2016 / Kidney Living /

15

MEDICAL RESEARCH

Meet Dr. Chris Kennedy The Ottawa Hospital / University of Ottawa

Where are you from? Where did you study?

I grew up in Ottawa and studied biochemistry at the University of Ottawa graduating with a PhD in 1997. I then moved to Nashville, TN where I studied kidney physiology at Vanderbilt University before returning to Ottawa to become a scientist at the Ottawa Hospital and Kidney Research Centre in July 2000.

How did you become interested in nephrology?

The kidney is one of the most complex organs in the body. Just when you think you’ve figured it out by answering a question about how something works, it surprises you with more mysteries.

I’ve always been intrigued by the complexity of the kidney.

What are you currently researching?

My lab wants to know how the kidney’s filters—the glomeruli, and its blood vessels, become damaged during the onset of diabetes (the leading cause of kidney disease) and high blood pressure.

Recently, we identified an enzyme that produces a highly reactive form of oxygen as a critical player in the injury process that leads to a leaky (damaged) filter. This enzyme could therefore become a target for drug therapy that would slow or even reverse the progression of diabetic kidney disease.

What word would you use to describe the kidney research community in Canada? Why?

Anxious. While the kidney research community consists of many world class basic and clinician scientists, the erosion of funding dollars along with substantial changes in the way grants are structured, evaluated and awarded at the Canadian Institutes of Health Research (CIHR) have many individuals anxious about their research programs. Despite this anxiety, however, I think there is reason for optimism.

How will your research impact the treatment of kidney patients? What is the long term goal?

It is my goal to understand how conditions such as diabetes and high blood pressure damage the kidneys’ filters at the earliest stages of disease. As we uncover more of these underlying mechanisms that give rise to such damage, the more likely we are to identify key players that can be targeted by drug therapies in order to reduce the burden of kidney disease in Canada before it progresses to untreatable stages.

What does the grant support from The Kidney Foundation mean to you?

Funding from The Kidney Foundation is a critical component of my research program. Over the years, biomedical operating grants have enabled my lab to move forward in our quest to understand how the kidney responds to damaging factors. For example, our current project has allowed us to identify the way in which drugs, such as ibuprofen, can inadvertently reduce the amount of blood that flows through the kidney. While such drugs are excellent at staving off pain and inflammation, they can nevertheless cause significant issues for the kidney. Informed by our research, future drug design could therefore focus on developing compounds that avoid these negative side effects on kidney blood flow, while preserving the beneficial effects on pain and inflammation. 

16 / Kidney Living / Spring 2016

www.kidney.ca/ontario

MEDICAL RESEARCH

Hypertension Research seeks ways to stop kidney scarring

by Dr. Joan Krepinsky

Dr Joan Krepinsky is the recipient of a Kidney Foundation Biomedical Research Grant. Dr. Krepinsky is a clinician-scientist with the Division of Nephrology, McMaster University. www.kidney.ca/ontario

H

igh blood pressure is a very common cause of kidney failure. When the filtering units of the kidney, called glomeruli, are exposed to high blood pressure, it causes them to become scarred. Once glomeruli become scarred, they cannot filter properly, and as scarring increases over time, kidney function is lost and people eventually need either dialysis or a kidney transplant to live. Even if blood pressure is improved with medications, this process can continue if scarring has already started. This is because the scarred kidney is more sensitive to even smaller changes in blood pressure. Finding ways to stop scarring from continuing, and thus keeping kidney function from becoming progressively worse, is a major goal of my lab.

An important reason for scarring in the glomerulus is that one of the cell types, the mesangial cell, senses high blood pressure as a stretch or pull, and responds to it. This response involves the activation of groups of proteins that interact with each other inside the cell, causing the cell to make more scar protein. With Kidney Foundation support, my lab has been studying how stretch can lead mesangial cells to make scar protein. We have specialized equipment that allows us to grow cells and mimic the stretch that we think happens inside glomeruli. By studying which proteins are “turned on” by stretch and contribute to the cell making more scar protein, we hope to find new treatments to prevent this from happening in patients.

We have been able to find that the cell’s support structure or cytoskeleton is very important to the cell’s response to stretch and production of scar proteins. When we block a part of this cytoskeleton called microtubules, we can prevent the cell from making scar proteins. We used colchicine, a drug that is commonly used for the treatment of painful joints from gout, to treat animals with high blood pressure and kidney disease. Colchicine protected the kidneys from scarring and helped to improve kidney function. This is exciting because perhaps in low doses, colchicine can help patients keep their kidney function from becoming worse.

The next step is to test this in patients. However, because colchicine can have side effects, especially if it has to be taken for long periods of time as would be needed to help protect the kidneys, we are continuing to try to understand how the cell’s cytoskeleton is important to the production of scar proteins. We have now identified that a protein called Pak1, which normally helps to regulate the cytoskeleton, is increased in scarred kidneys and is important to the mesangial cell’s response to stretch. We are now working to understand how Pak1 leads the cells to make scar proteins. We are also studying, in an animal model of chronic kidney disease and high blood pressure, whether mice that don’t have Pak1 are protected from developing kidney scarring. As Pak inhibitors have already been made, we will also be able to test whether these protect the kidneys. This is important since Pak inhibitors that are available block not only Pak1, but its other related family members as well, and we don’t yet know how important these family members are to kidney scarring. Our studies will tell us whether blocking Pak1 may be a potential new treatment for kidney scarring from high blood pressure.  Spring 2016 / Kidney Living /

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ORGAN DONATION RESEARCH

Restoring balance in kidney donations

D

r. Marie-Chantal Fortin is an assistant clinical professor, nephrologist and researcher at the Centre Hospitalier de l’Université de Montréal (CHUM) research centre. Recipient of a grant from the KRESCENT program financed by The Kidney Foundation of Canada, she conducts research on the bioethics of altruistic living organ donation, which has placed her at the leading edge of kidney transplantation medicine.

“When a person wants to donate a kidney but has no family member in need of one,” she explains, “we call the act of donating an organ an altruistic or anonymous living donation.

The challenge is finding a compatible recipient. When an organ donation takes place, two important conditions need to be met: blood type compatibility and immune system compatibility.” Being immunologically compatible means that the recipient does not have any donor-resistant antibodies.

“I study the ethical issues surrounding exchange programs,” she said. “People whose blood type is “O” are universal donors. But they can only receive a kidney from someone whose blood type is also “O.” This phenomenon is at the root of the current imbalance.”

18 / Kidney Living / Spring 2016

In 2009, the Canadian Living Donor Paired Exchange (LDPE) program was launched to promote donor-recipient pairing.

While the program led to over a hundred successful transplants, it also underscored the inherent injustice facing people with the “O” blood type.

As Dr. Marie-Chantal Fortin explained, “The goal of my study is to compile empirical data on how those involved view compatible pairs’ participation in the LDPE, so that we might better deal with the natural disadvantage that O-type recipients have. (This disadvantage is also referred to as Altruistic Unbalanced Paired Kidney Exchange (AUPKE)). By understanding the positions regarding this problem that are held by transplantation professionals, attending nephrologists, nurses working in predialysis and with potential living kidney donors, and donor kidney recipients, we hope to develop preliminary AUPKE guidelines.” Given that recipients with O-type blood are at a marked disadvantage, this issue needs to be dealt with quickly.  Reprinted with permission from The Kidney Foundation of Canada, Quebec Branch, Winter 2015 Kidney Link newsletter.

www.kidney.ca/ontario

MEDICAL RESEARCH

C

Clinical Research From bench to bedside

linical trials are research studies that test new ways to prevent, detect, treat or manage disease. According to the Ottawa Hospital Research Institute, clinical research is the stage of medical research that involves human volunteers. Typically, this stage comes after experiments in cell cultures and animals, often referred to as basic research.

A clinical trial is one type of clinical research that follows a pre-defined plan or protocol.

Clinical trials provide information about the safety and effectiveness of new approaches to see if they should become widely available.

Participation in a clinical trial may be an option for a person with kidney disease or someone at risk for developing the disease. It’s another way that you can become an active

participant in moving research forward to find better ways to detect, manage and treat kidney failure. Participation is always voluntary, and one should never feel obligated to participate.

Without clinical research it would be very difficult to move research from the lab setting to the bedside. Information gleaned from clinical research helps to inform decisions new treatments, effectiveness of new medications, surgical techniques etc.

With the information gained through clinical research, medical teams can learn the causes of diseases, as well as how to prevent and treat them. Clinical trials must be approved by the Research Ethics Board to ensure that the rights and well-being of the patient are protected.

From time to time, The Kidney Foundation is asked to share research opportunities with patients and caregivers. Learn more at www.kidney.ca/surveys. In addition, your renal unit or hospital may also post information about opportunities to participate locally in research. ď Ž

Count me in!

Kidney Research Donation Form Mail your completed form to 201-1599 Hurontario Street, Mississaua, Ontario L5G 4S1, or visit www.kidney.ca/kidneyliving to make your donation I want to support the good work that kidney researchers are doing.

Please print clearly

Name ___________________________________________________________________________________ Address __________________________________________________________________________________

City___________________________________________ Prov_________Postal Code______________________ Phone________________________________Email__________________________________________________ Donation $___________.

All donations are gratefully accepted. Your contribution will help us provide needed services in your community.

Method of Payment: q Cheque

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Signature _________________________________________________________________________________ www.kidney.ca/ontario

Spring 2016 / Kidney Living /

19

MEDICAL RESEARCH

Kidney Research: Past, present and future

by Nicole Laidler

Dr. William Clark

D

r. William Clark has witnessed significant progress in the prevention and management of renal disease over his 40-year career as one of Canada’s leading nephrologists. Each step forward was made possible by researchers committed to better understanding and treating this complex disease. “People go into research because they are unhappy about the current state of affairs,” notes Dr. Clark, who was introduced to nephrology during his first rotation as a medical student at the University of Western Ontario.

The discipline was still in its infancy, but Dr. Clark was hooked. After completing his training in London, England and at Toronto’s Sick Children’s Hospital, he returned to London, Ontario in 1976. In what Dr. Clark calls “the bad old days,” the outlook for people diagnosed with kidney failure was bleak.

“Things have changed dramatically, particularly over the past 15 years,” says Dr. Clark.

“All of those changes are the direct result of research.” We now know that removing salt from the diet and lowering blood pressure can play a significant role in slowing the progression of kidney failure. “We no longer have an exponential growth rate in end-stage renal disease. In fact, the rate is steady or slightly declining. That is important progress,” says Dr. Clark. Patients who require dialysis are able to enjoy a better quality of life than ever before, thanks to advancements in medical technology.

“Dialysis can now be delivered in a variety of ways,” Dr. Clark explains. “Equipment is much more efficient, and the time patients are on the machine has been minimized. Canadian researchers are currently developing miniaturized dialysis equipment,” he adds, “offering the possibility of portable and continuous dialysis.”

And of course, transplantation outcomes have improved dramatically.

“If you looked at the first 10 years of transplantation, our success rates were about 45 percent,” says Dr. Clark. “Now most people are 90 percent or beyond.” Ongoing improvements to immunosuppression and a better understand-

20 / Kidney Living / Spring 2016

ing of secondary factors continue to delay the chronic rejection rate, allowing more people to be retransplanted if their organ fails.

Dr. Clark notes that living donor transplants currently account for only 10 to 20 percent of all transplant programs, a number he hopes will double in the coming years. “There are a lot of efforts made by The Kidney Foundation as well as transplant nephrologists to educate people about transplantation,” he says. Stem cell research holds the promise that kidney patients will one day be able to receive an organ made from their own cells. “That would eliminate the need for immunosuppression, which would be fabulous for kidney replacement therapy,” Dr. Clark says.

Much work is being done in the area of prevention, including current research trials examining the impact that diet and hydration have on the prevention and progression of renal disease.

“What is really exciting is that we now have groups of nephrology investigators across Canada who have alliances, so they are much more effective in terms of their research activities,” says Dr. Clark. “The day of the individual investigator is gone and that’s a good thing because it means we’ll be able to progress more rapidly. That’s been a big change over the last 10 years.”

“The Kidney Foundation of Canada played a key role in establishing those alliances,” says Dr. Clark, who serves as the scientific co-chair of the KFOC research council. The foundation also continues to play a lead role in the funding of kidney research across Canada.

“Governments are finding themselves increasingly burdened with the delivery of health care, let alone research,” Dr. Clark notes. “Without The Kidney Foundation, kidney research in Canada would be really compromised.”

“It’s important for people to know that their effort to raise funds actually does count,” he says. “With more funding we will get better answers.” 

www.kidney.ca/ontario

MEDICAL RESEARCH

Patient engagement helps set new research priorities New efforts are underway to give people with kidney disease more opportunities to be part of the research process.

Patients are increasing being offered a chance to be a partner alongside scientists and clinicians in the quest for new treatments and cures. While a relatively new concept, it is an idea that is catching on in countries such as Canada, the U.S., and the United Kingdom.

by Heidi Westfield

Barbara LeGay www.kidney.ca/ontario

B

arbara LeGay has lived with kidney disease since 1976. She has had four transplants, and now visits her local hospital three times a week for hemodialysis. After retiring from her job as a lawyer with the federal government, she joined the board of The Kidney Foundation in Atlantic Canada.

Recently, Barbara volunteered to take part in a consultation process, along with patients from other regions of the country, to help set research priorities. She attended conferences, and met with kidney specialists, researchers and nurses.

“It was a really wonderful experience,” she recalls, looking back to a meeting in Montreal in 2014. “You have people who are extremely intelligent doing these research projects, in the same room with us, listening to what we had to say, and seeming to respect it and learn from it.”

Barbara says the process was illuminating, both for patients and those charged with caring for them.

One focus group, for example, highlighted problem side effects of kidney disease such as itchy skin, pain, sexual dysfunction and fatigue. “These are things that the general public doesn’t necessarily identify with kidney disease,” she notes, “but they are the things that really bother patients.”

Dr. Andreas Laupacis, Executive Director of the Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Toronto, believes patients deserve a place at the table when it comes to identifying research priorities. He points out that very often they can make the research better. “I am not saying people who have kidney disease should have exclusive say, but they should have some say because they have the disease. It is a fundamental issue of fairness.”

In 2013, the research network CANN-NET developed a patient survey, supported in part

by The Kidney Foundation of Canada, to identify

Dr. Laupacis

the top 10 research priorities for people with chronic kidney disease, both on dialysis and in earlier stages. The results would be used to help inform funding organizations on the types of studies important to patients. Dr. Laupacis was Chair of the Steering Committee.

“What we did was develop a website that people could log onto and submit what their research priorities were,” Dr. Laupacis explains.

Along with the online surveys, they approached patients in dialysis units and also held face-to-face meetings. The outreach yielded more than 300 responses, and each respondent identified an average of six research priorities. The final top 10 lists were put together at a one-day meeting, by a group consisting of about an equal number of patients and clinicians.

“I was slightly nervous about how the patients and clinicians would interact in a small group,” Dr. Laupacis admits. “What I thought was great, was that it went very well. The discussion was highly respectful.” The research priorities identified in that initiative, Dr. Laupacis adds, offer a unique viewpoint. Patients are able to single out questions that are important in their lives that researchers might not value as much as they do.

He points to the issue of itchy skin; there is very little research in an area that patients have time and time again identified as important.

Barbara would like to see more people with kidney disease taking part in the research process. “We are the end-user. I don’t discount the intelligence and dedication of all these research people. But if it doesn’t meet the needs of patients, then what is it for?” She would like to think her contribution might help other kidney patients in the future, or perhaps lead to advances that will detect kidney disease before it actually takes hold.  Spring 2016 / Kidney Living /

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COMMUNITY HIGHLIGHTS

community highlights Transplant Celebration a Resounding Success u Over 300 healthcare professionals

and people whose lives had been impacted by a kidney transplant came together last October for the Kidney Foundation Transplant Celebration.

The celebration was highlighted by presentation of the Eastern Ontario Chapter’s first Lifetime Achievement Award to Dr. John Dossetor who coordinated the first transplant in the Commonwealth in 1958. Special thanks to sponsors, Royal LePage/Gale Real Estate, Trillium Gift of Life Network (beadonor.ca) and the Betram Loeb Organ-Tissue Donation Institute.

L-R, Presenter of Lifetime Achievement Award Patricia Treusch; Award recipient Dr. John Dossetor, with Nola Johnson the kidney donor of first successful transplant in Canada - 1958.

Photo Credit: Caroline Phillips

Congratulations to two of our amazing Kidney Foundation volunteers, Debbie Hodgins and Angie Tuovinen, who were recently honoured by the Canadian Association of Nephrology Social Workers (CANSW).

Debbie Hodgins was awarded the 2015 Mary Lou Karley Mentorship Award for her strength, determination and precise attention to detail.

Angie Touvinen received the 2015 Jane Dicks Award which recognizes a contribution of excellence in the field of Nephrology Social Work. Angie has been a strong advocate for the profession since she stepped into her role of Nephrology Social Work at the Windsor Regional Hospital. Anne Brinkman (centre) was also honoured

by CANSW on her retirement from The Kidney Foundation where she worked for over 20 years as a Program Manager and provided development and oversight of the Kidney Connect Peer Support Program.

p

p In October, members of the Italian Night Committee and representatives

from The Kidney Foundation were on hand at the Ottawa Hospital where a special plaque was unveiled to commemorate support from the 2015 annual Italian Night dinner in support of kidney research. L to R: Sharon Martin, Ottawa Hospital Foundation; Janet Graham, Ottawa Hospital; Dr. Chris Kennedy, Ottawa Hospital; Richard Bosman, Italian Dinner Committee member; Mario Frangione, Italian Dinner Committee member; Dr. Kevin Burns, Ottawa Hospital; Janice Bissonette, Ottawa Hospital; Bruce Hill, KFOC and Dr. Ted Clarke, Ottawa Hospital

22 / Kidney Living / Spring 2016

p Volunteers from the Kingston Chapter assisted at the 2016 Kingston Wedding Show, helping to raise funds for the Foundation.

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

For details about these and other events in your community, call The Kidney Foundation of Canada Chapter nearest to you, or visit www.kidney.ca/ontario.

26 26

March

1-31 Kidney Health Month 10 World Kidney Day 10 Paint Nite, London 10 Artilicious, Waterloo-Wellington 15 Income Tax Information Session, Hamilton 16 Kidney Connect Support Group, Oshawa 16 Kidney Connect Support Group, Thunder Bay 22 Kidney Connect Support Group, Niagara-St. Catharines

April 5

Income Tax Information Session, Hamilton 9 Paint Party with the Painted Cat, Sarnia 13 Kidney Connect Support Group, Kitchener 19 Kidney Connect Support Group, Thunder Bay 20 Kidney Connect Support Group, Oshawa 20 Kidney Connect Support Group, Niagara-Welland 21 Stand Up for the Cure, London 24 Alive to Strive, Ottawa 30 10th Annual Ball Hockey Challenge, Hamilton

May 7

10 14 18 18 24

Impressions, African Caribbean Kidney Association, Scarborough Kidney Connect Support Group, Kitchener Ontario Branch Annual General Meeting, Toronto Kidney Connect Support Group, Oshawa Kidney Connect Support Group, Thunder Bay Kidney Connect Support Group, Niagara-St. Catharines

www.kidney.ca/ontario

30

June 2 8 15 21 22 25

July 8

25

Celebrity Men in a Fashion Event, Sarnia Celebrity Men in a Fashion Event, Windsor Kidney Connect Support Group, Mississauga Celebrity Men in a Fashion Event, Kitchener-Waterloo Kidney Connect Support Group, Kitchener Kidney Connect Support Group, Oshawa Kidney Connect Support Group, Thunder Bay Kidney Connect Support Group, Niagara-Welland Hamilton Kidney Golf Tournament Christine Labrasceur Golf Tournament, Sarnia Kidney Connect Support Group, Mississauga

September

Kidney Walks will take place in communities across Ontario.

Details will soon be available at www.kidneywalk.ca.

E-newsletter Get Kidney Foundation news direct to your inbox by registering for our free monthly e-newsletter. Receive the latest news and information aimed at people living with kidney disease, their families and supporters. Find out about how the Foundation can help you, what you can do to support kidney patients, and what’s happening with kidney research in Canada.

Register today—kidney.ca/ ontario/e-news.

Ontario Branch 1599 Hurontario St., Ste. 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 kidney@kidney.on.ca African-Caribbean Kidney Association 1-800-387-4474 Ext. 4140 acka@kidney.on.ca Brampton 1.800.387.4474 ext.4120 Brant County 1.800.387.4474 ext. 4130 Central Ontario 1-800-387-4474/905-278-3003 dpiotrowski@kidney.on.ca Chinese Renal Association 1-800-387-4474 Ext. 4977 pchan@kidney.on.ca Eastern Ontario 613-724-9953/1-800-724-9953 bhill@kidney.on.ca Hamilton & District 1-800-387-4474 Ext. 4969 pcook@kidney.on.ca Kingston 613-542-2121 bhill@kidney.on.ca Niagara & District 1-800-387-4474 Ext. 4969 pcook@kidney.on.ca North Bay 1-800-387-4474 Ext. 4110 Northern Superior 807-624-2680 mharms@kidney.on.ca Sarnia-Lambton 519-344-3462 ehayter@kidney.on.ca Sault Ste. Marie 705-949-0400 tmcmillan@kidney.on.ca Southwestern Ontario 519-850-5362 rramzanali@kidney.on.ca Timmins-Porcupine 705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District 519-977-9211 emuscat@kidney.on.ca Western Ontario (Kitchener/Waterloo) 1-800-387-4474 Ext. 4862 eturney@kidney.on.ca Spring 2016 / Kidney Living /

23

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