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Special issue magazine for the launch of The New Challenge Campaign.TRANSCRIPT
A FUTUREWITHOUTFAILURE
STRENGTH AND HOPE The Kidney Foundation of Canada is determined to break through the barriers around kidney disease.
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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
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.
Much MoreThan Hope
National Executive Director, The Kidney Foundation
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.
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.
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.
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 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 re-
establish 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.”
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Ties That Bind
BY NICOLE LAIDLER
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Jaya Katwaroo
Jaya and her sister Sara
“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.”
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.
DR. DIMITRIOS OREOPOULOS IS
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.
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.
Dr. “O”the incomparable
by Nicole Laidler
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“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.”
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.
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.”
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.
SURELY SOMEONE CAN DO SOMETHING?
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LookingAheadLooking
Back
9 Dr. George deVeber
BY HEATHER WRIGHT
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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.”
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 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.
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.”
Transplants were also being done, but as Dr. deVeber explains, “In the early
days, transplants from deceased donors only had about a fifty percent, one-
year 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
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.
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.
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
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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.”
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.John Boidman
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.”
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 [email protected] or 1-800-387-4474 ext. 4960.
www.kidney.ca/planned-giving
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
Legacy Giving Society
STORIES OFFAILUREAND HOPE
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.
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.
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.”
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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.
Ike Zhang
Linni Xu
Jason Sheath FROM SURVIVING TO THRIVINGIn 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
him paralyzed down one side in 2005, Sheath was diagnosed with end-stage
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.
The stress and depression brought on by dialysis caused Sheath to lose his
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
wait for a transplant, which might or might not help me.”
Sheath struggled with feelings of despair, until an uncle suggested a return
to school.
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
Bursary, which helps individuals living with kidney disease, dialysis or kidney
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.”
Lauren Herschel ONE KIDNEY, FOUR TRANSPLANTSLauren 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.
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.
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.
“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
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Darren Martin SAVED BY A MOOSEFor most people, hitting a moose is fatal. For Darren Martin, it just may have
saved his life.
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.
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-year-
old 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.”
Susan Jacks A HERO IN THE FAMILYCanadian 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.
“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.”
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.
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.”
Darren and his wife Andrea
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“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
“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
RESEARCHWITH RESULTS
KRESCENT Year after year, the internationally-
reputed 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.
Dr. Michael Walsh
Dr. Katalin Szaszi
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18 19
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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.”
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.
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%.”
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.
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.
“There’s an Ottawa-based KRESCENT post-doctoral fellow, Dylan Burger,”
remarks Dr. Burns, “who’s working on something called ‘endothelial micro-
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
together to look at patients with diabetic
kidney disease and other forms of chronic
kidney disease to see whether these micro-
particles 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 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 these lines.”
“KRESCENT encourages people to work outside the box, outside their own discipline.”
Dr. Kevin Burns and KRESCENT Researcher Dr. Sunny Hartwig
20
“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
the phrase ‘dialysis’, but it wasn’t until about 1913 that
Abel and his colleagues were able to dialyze the first
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
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.
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.
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
new access points for each treatment. Life sustaining dialysis became an option for a wider number of patients.
EARLY SUCCESS WITH TRANSPLANTS
21
RESEARCH Game Changers
PHOT
O BR
YN G
LADD
ING
When Dr. Dossetor, The Kidney Foundation’s
co-founder, first became involved in the field of
nephrology in the 1960s, it was very young. He
recalls that not many doctors were interested in
entering the field because there wasn’t much
that could be done for kidney patients.
BY HE AT HER WRIGHT
“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.
Marian Reich
Susan McKenzie
THE IMPLANTIBLE VASCULAR ACCESS SYSTEM
23
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
Stem cell research is another game changer. A recent study, carried out at the
University of Louisville and the Northwestern Memorial Hospital in Chicago,
involved eight patients who received transplants from live donors. After the
recipients’ immune systems were suppressed, the transplants were done
and their bodies were given the donors’ stem cells a couple of days later.
22
On April 24th 1979, I was granted the gift
of life. 33 years, 396 months, 12,052 days,
289,272 hours and counting...
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.
David Wm. Brown
Transplant recipient 1979
&AL G. BROWN
ASSOCIATES
A Gift of Life
This ad is generously sponsored by Al G. Brown and Associates and Families
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.
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.
But these two decades will be costly.
By supporting the New Challenge Campaign, you can help us support game-
changing research that could transform the future for kidney patients. You can
help us transform lives. Visit kidneycampaign.ca
kidney.ca/store
These sterling silver pendants and lapel pins are exclusively available through The Kidney Foundation of Canada.
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.
A MEANINGFUL GIFT
2524
PHOT
O BR
YN G
LADD
ING
Jason Kroft, Kidney Foundation donor
and Ontario Chair of the Campaign
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.
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.
We’ve Come A Long Way In 50 Years.
by Nicole Laidler
Just imagine what an even greater investment could do.
27
The Not-So-Easy Chair
kidneycampaign.ca
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.
Research and early detection will help make this chair a thing of the past. Join us in the Challenge.
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.
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.
This September, make the biggest difference you’ve ever made in your life.
Take the first step, visit www.kidneymarch.ca
March To A Different Drummer
Michel Perron
“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.”
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 life-
changing 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
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
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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.
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.
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.
“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.
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
30
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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.
“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.”
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.
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.
“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.
“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.”
We want to do more. Join us in the challenge
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.”
Shire Canada Inc.2250, boul. Alfred-Nobel suite 500Saint-Laurent (Québec) H4S 2C9
514 787-2300www.shirecanada.com
Braveis stronger than big.
To be as brave as the people we help.
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 ChallengeCampaign.
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.
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