Winter 2015 - The Kidney Foundation of Canada

Jim Hutton explains why
patients’s voices matter
Lisa Hamp’s journey with
kidney disease
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page 3
THE KIDNEY FOUNDATION OF CANADA SOUTHERN ALBERTA AND SASKATCHEWAN BRANCHES
IN THE NEWS
WINTER 2015
FEATURE
A Message from
our Executive
Director
Stepping Forward – Moving from Intent to Action
Joyce Van Deurzen
Merry Christmas and Happy Holidays to you!
It’s the season when our hearts and minds turn
to giving and helping others. We, at the Kidney
Foundation, are deeply moved by the kindness,
compassion, and generosity we witness year round.
You give because you have the hope and belief that
your gift will truly do some good for others in this
world. That’s a responsibility we take to heart.
We know that people are struggling with the burdens
of kidney disease every day, needing our help now.
And we also know that investing in creating a
future without kidney disease, our investment in
research, is critical for the long term. Research is
truly the ultimate patient service, your best hope for
reducing the impact of kidney disease, preventing
or someday reversing kidney damage altogether.
That’s why we are excited to share with you the
promise of CAN-Solve CKD, a game changing
research initiative we have committed to on
behalf of kidney patients. Read about it in this
issue and call me if you would like to know more.
This opportunity to have your donation matched,
creating a $25 million investment in kidney
research over the next five years, will certainly
change lives.
Peer support, information on living well with
kidney disease, identifying and referring those most
at risk through our targeted screening and education
initiatives, financial assistance programs, and
advocacy work to increase the number of kidneys
transplanted by 50% over the next five years are key
programs that you, our donors, are funding. None
of this work would continue without you.
Your support changes lives. On behalf of everyone
living with kidney disease, thank you.
Joyce Van Deurzen
Chris and Toni Bigalow with their son, Christopher
F
or Chris Bigelow, stepping up to take action didn’t happen right away. The young husband
and father was born with a condition that affected his kidneys and at the age of 13 he had to
begin dialysis treatments. Chris received a kidney transplant seven months later and despite a
difficult transition and recovery after surgery, he continued to live a fairly typical life.
“Each year around the anniversary of my transplant I always get that feeling like I should be doing
more to help the Kidney Foundation after all they did to help me. Like there was something
more I should be doing.” His parents had suggested several ways that Chris might get involved
in raising awareness about kidney disease and organ donation, but Chris didn’t feel comfortable
about being the centre of attention and sharing his story. He wanted to make a difference and
step up, but couldn’t find the right thing that fit for him.
Like most young adults, Chris’s focus turned to education, beginning a career, and getting
married. Earlier this year Chris’s son, Christopher, was born. The first child to Chris and his wife
Toni, Christopher was born with the same condition that had led to Chris’s kidney disease.
Chris had heard of Kidney March, the 100 kilometer walk over three days in support of The
Kidney Foundation of Canada. He thought about registering several times over the years but the
timing wasn’t quite right or some other life event popped up.
A few days after baby Christopher’s diagnosis, Chris and his wife learned that Christopher’s
kidneys were fine and that he was not at risk for developing kidney disease. “Obviously
Christopher’s diagnosis didn’t sway my decision to do Kidney March, I was intending to do it all
along, but it weighed heavily on my mind to think that something like this could be a reality for
us. It was terrifying and I think that helped motivate me to take action.”
Chris and his parents, Davis and Diana, participated in Kidney March this year. “It was an amazing
experience and I couldn’t believe how many people came out who really had no connection to
kidney disease at all.” Chris spent three days surrounded by people from all walks of life, those
Continued on page 4
LIVING WELL - MAKING HEALTHY CHOICES
RESEARCH
A Research Initiative Designed
By Kidney Patients For Kidney Patients
M
ore than 4 million Canadians suffer
from or are at risk of developing kidney
disease. That’s 1 in 10 Canadians – more
than breast or prostate cancer combined —
but unlike these other diseases, there is no
comprehensive plan in place to help these
people and their families, and astoundingly,
there have been few significant advances
in kidney treatment or diagnosis in over 20
years.
“Canadians
Seeking
Solutions
and
Innovations to Overcome Chronic Kidney
Disease” (Can-SOLVE CKD) is a promising
new research network currently under
development that aims to bring about
some long overdue improvements for
kidney patients and their families. This
unprecedented research initiative is the first
of its kind in the world, bringing together the
entire kidney community, including patients,
policy makers, clinicians, and the best kidney
researchers across Canada, to work together
to solve key problems related to treating and
preventing chronic kidney disease.
Under the leadership of Dr. Braden Manns
(Foothills Hospital, Calgary) and Dr. Adeera
Levin (St. Paul’s Hospital, BC), The Kidney
Foundation of Canada and The Canadian
Society of Nephrology have partnered to
design and implement this impactful $25
million initiative, the overall goal of which is
to ensure that each kidney patient in Canada
‘receives the right treatment for them at the
right time - regardless of age, sex/gender,
location or ethnicity.’
and early diagnosis of kidney disease. The CanSOLVE CKD research initiative is designed to
change this.
Benefits for Patients and Families Within
Five Years
Within 5 years, 100% of people at highest risk,
including all family members of people with
kidney disease and all Aboriginal Peoples,
will be offered evaluation, 85% of kidney
patients will be on the proper medications
and 50% more patients will be involved in
clinical trials than at present.
These ambitious, but achievable goals will
transform the study and care of patients with
kidney disease in Canada.
Big Vision: Personalized Impact
Personalized medicine strives to improve
health outcomes of individual patients in
everyday clinical practice, taking into account
each patient’s own unique goals, preferences,
values, economic circumstances, and the
specific nature of their disease. As the CanSOLVE CKD research projects evolve over the
next five years, hundreds of kidney patients will
have the opportunity to become intimately
involved, serving on sub-committees related
to the key research themes, and attending
regular workshops and update meetings. This
kind of patient engagement is the only way to
ensure one of the most important outcomes
of Can-SOLVE CKD – more personalized
treatment plans for kidney patients.
“There has never been, and may never be
again, a more comprehensive, collaborative,
cross-Canada research initiative focused
on kidney research with the potential to
significantly impact the lives of kidney
patients within five years — or one that
incorporates the experiences and views of
patients with equal weight, along-side the
expertise of researchers and nephrologists to
find real solutions. For the first time, patients
and caregivers are truly driving the research
questions and providing crucial input and
feedback along the way. This is groundbreaking research, and I personally believe
the overall impact will be incredible.”
Dr. Adeera Levin, Co-Chair, Can-SOLVE CKD.
A Unique Opportunity to Double the
Impact of Your Support
Drs Tonelli, Hemmelgarn & Manns
Photo credit Trudie Lee Photography,
supplied by Alberta Innovates - Health Solutions
Research Done Differently
Most people believe research is the key to
better treatments or possibly even finding
a cure for kidney disease, but research has
a reputation of being complex and slow,
usually taking decades to bring about any
meaningful change in treatment or diagnosis.
What’s more, the field of kidney disease has
the lowest number of clinical trials of any
field in medicine, and whatever evidence
based recommendations have emerged from
these trials have simply not translated in a
meaningful way into improving the treatment
2
Through Can-SOLVE CKD, The Canadian
Institutes of Health Research (Federal
Government) is offering the potential of
a dollar match of up to $12.5 million on
all commitments pledged over the next
five years (2015-2020) directed toward
Can-SOLVE CKD research initiatives.
The Kidney Foundation of Canada is
proud to have pledged a minimum of
$3.35M to make this transformational
research project possible – but we need
your help.
Because of this unique, one-time
matching opportunity, there has never
been a better time to support kidney
research in Canada.
John, Christopher and Leslie Pearson
There has never been a better time to
support kidney research in Canada
That is the sentiment of John and Leslie
Pearson, whose son Christopher suffered
with a childhood kidney condition known as
Nephrotic Syndrome when he was only three.
Today, Christopher is fully recovered and
recently graduated from McMaster University
with a degree in engineering — but the
couple remains powerfully impacted by their
experience and struck by how little is actually
known about the prevention and treatment
of childhood kidney disease, almost 20 years
after their experience. Leslie and John are
determined to help other families going down
the same road they did.
So much so that the couple recently
established The Pearson Family Research
Award with an initial gift of $200,000 to
support two researchers annually in the
area Nephrotic Syndrome. In September,
the Pearson’s pledged a new commitment of
$400,000 over the next five years. They were
inspired by the potential of the dollar for
dollar match through the Can-SOLVE CKD
granting program, allowing them to double
the impact of their gift.
“Dialysis and transplants are wonderful – but
to me it’s about solving the problem before
you get to that stage. That’s my goal. By the
end of my life, I would like to see the mystery
of childhood Nephrotic Syndrome solved,”
Leslie Pearson
To learn more or make your
own commitment to support
Can-SOLVE CKD go on-line
to
www.kidney.ca/give
or
call Susan McKenzie, Senior
Director
of
Development
for
Western
Canada
at
1-888-396-4469
THE KIDNEY FOUNDATION OF CANADA SOUTHERN ALBERTA & SASKATCHEWAN BRANCHES
WINTER 2015
LIVING WELL - MAKING HEALTHY CHOICES
TEAM PLAYERS
Patient Perspectives Matter — Jim Hutton
F
or Jim Hutton, research offers hope. Jim
acquired kidney disease suddenly as a result
of chronic necrotizing pneumonia that shut down
his kidneys. “It was a huge upheaval for me. I went
through a grieving process for a life I thought I
would have that had now been lost.” It took Jim
a long time to come to accept his new normal,
but with time he has come to accept living with
chronic lung disease and going to dialysis three
times per week due to kidney failure.
Jim believes that research is critical because we
must discover ways to improve treatments, and
potentially find a cure, for people living with
kidney disease. “Years ago dialysis was fairly new.
It’s definitely more efficient now and research
made that happen. Without research, none of the
dreams about a better future can come true.”
Jim believes in patient involved research. “I think
patients need to know that people are listening to
Jim Hutton bikes while on dialysis
them. There are lots of people going through the
medical system who don’t always know what’s going on. As someone who’s going through the same thing, I can offer empathy and
perspective to the research that can only be presented from the patient’s perspective.”
Being empowered in his treatment and being involved in raising awareness about kidney disease is important to Jim. “It’s easy to sit
back and do nothing and expect everybody else to do things for you. My way, I get to be involved and maybe improve the lives of other
people.” Jim is actively participating in the exercise program at his local dialysis unit. He pedals on a special bike while he is doing his
dialysis treatments three times per week. Jim and his family have also become deeply involved in Kidney March. “For all three of us it
has become a big part of our lives. The more involved we get, the more involved we want to be.”
Patient involved research allows people like Jim to feel some control over their lives. “When you are on dialysis your life is not your
own. We live with a condition that has to be treated every couple of days and if you don’t get treatment, you die. Basically that’s it.
You have no choice.” Having the voice of the patients heard and having their say in the future of research in Canada offers hope and
strength to everyone living with kidney disease.
To learn more how you can become involved in patient centred research, call Jill Goth, Manager, Programs & Organ Donation Initiatives
at 1-800-268-1177 ext. 25
PEOPLE FIRST
My Journey with Kidney Disease — Meet Lisa Hamp
S
askatoon resident Lisa Hamp’s journey began when she set out to take
on the challenge of Kidney March, an ambitious 3 Day, 100 kilometre
pilgrimage from Kananaskis Country to Calgary, and it ended when she
crossed the finish line at Canada Olympic Park on September 13.
“Crossing that finish line with my best friend, Kyla, is a feeling I’ll never
forget,” says Lisa. “It made all of the fundraising and training and the walking
we did so worth it.”
Lisa Hemp, flagbearer, in Kidney March 2015 opening ceremonies
Lisa’s journey with kidney disease began in 1982 when she was diagnosed
with the disease at the age of 16. She began peritoneal dialysis in 1991.
In 1993, she received a kidney transplant that lasted for two years. She
started hemodialysis in 1995. At that time it was discovered that due to her
complicated immune system it would be difficult to find a matching kidney
for her. Lisa and her doctors remain optimistic that there is a match for her
somewhere out there. She has been on the transplant waiting list for 19 yrs.
Continued on page 4
Benefits of Exercise for People Living with Kidney Disease
Regular exercise offers many health benefits to all of us, but especially to those people with chronic kidney disease. Dr. Stefan Mustata is a Nephrologist
and Medical Director of the KEEP Program (Kidney Exercise & Encouragement Program). He believes that all of us need to become more physically
active. “Everyone has the capacity to improve their physical condition. Those at lowest levels of physical fitness have the most to gain from modest
improvements.” According to Dr. Mustata regular exercise offers:
M
M
M
Better control of blood pressure, blood sugars, lipids
Prevention of additional illnesses
Improvements in body composition
WINTER 2015
M
M
Reduction in stress, anxiety, depression
Preserves bone mass and reduces risk of falling
THE KIDNEY FOUNDATION OF CANADA SOUTHERN ALBERTA & SASKATCHEWAN BRANCHES
3
LIVING WELL - MAKING HEALTHY CHOICES
Continued from page 1: Stepping Forward - Moving from Intent to Action
living with kidney disease and those who didn’t know anyone living with kidney disease. “Kidney March has been the first time in a
long time that I’ve been able to openly talk to people who truly understand what I’ve gone through.”
Kidney March is more than a walk, it’s a movement. It’s building a community of people who want to make a difference. Like Chris,
hundreds have stood up and decided to make a difference. There are lots of ways to make a difference - register for Kidney March,
volunteer, donate funds, be an advocate - but the key is deciding to move from intent to action. “We are on the verge of some amazing
opportunities in research and it will take the whole community to come together and push forward to meet our ambitious research
goals”, says Joyce Van Deurzen, Executive Director of The Kidney Foundation of Canada, Southern Alberta & Saskatchewan Branches.
If someone was thinking about becoming involved through Kidney March or any other way, Chris has a simple message. “It doesn’t
matter what you do, just do something.” One person can make a difference, but many people can change the world!
DONATE
YOUR CAR
Season’s greetings to all
TO THE KIDNEY FOUNDATION
In this issue of Living Well, you’ll find a special holiday greeting. On the reverse side
of the card, there’s an opportunity to make a donation to
The Kidney Foundation. Donors can choose to make a single donation,
or to have their contribution spread out over the year in
monthly donations.
Free Towing!
“The holiday season is a time when we reflect on our good fortune,
and the events of the past year,” says Joyce Van Deurzen, Executive Director of the
Southern Alberta and Saskatchewan Branches.
“We hope the special greeting card will provide an opportunity for our donors to help
those who are less fortunate and to contribute to the programs they know will make a
difference.”
Valuable Tax Deduction!
www.kidneycar.ca
All of the programs and services provided by
The Kidney Foundation are funded by donations.
If you prefer to donate online, you can do so at www.kidney.ca/give
Thank you!
Continued from page 3 My Journey with Kidney Disease - Meet Lisa Hamp
Living well with her kidney disease has been a priority for Lisa. “Maintaining my health has been difficult, but with exercise, a good
diet and a positive attitude I have been able to get through and move forward. I decided to do Kidney March with the hope of raising
awareness of the importance of organ donation and the great need that exists. I also want to encourage patients to stay as healthy as
possible by staying active, says Lisa.
Kidney March is about doing the most you can possibly do for kidney disease and organ donation. Lisa decided, “I will walk as far as
I can over the three days. I hope to be an inspiration to all the people who suffer with kidney disease and give hope to all who know
someone affected by this debilitating disease.” Lisa was one of five people on dialysis who participated in Kidney March 2015. She is
truly an inspiration to all.
CALGARY
LETHBRIDGE
REGINA
¾ Kidney Education Day — Join patients and
¾ Kidney Walk — May 28, 2016
¾ Kidney Walk — Fall, 2016
their families to hear speakers on topics such
as kidney disease and prevention, nutrition
and exercise
¾ Kidney March Expo — April 17, 2016
MEDICINE HAT
YORKTON
¾ Kidney Walk — May 14, 2016
¾ Kidney March — September 9-11, 2016
SASKATOON
¾ Kidney March Alumni Reunion
November 5, 2016
¾ Kidney Walk — Spring, 2016
¾ Kidney Walk — June 12, 2016
¾ Fright Night Fashion Gala! — October, 2016
Targeted Kidney Screening events across Southern Alberta and Saskatchewan throughout the year
Living Well is published several times a year by The Kidney Foundation of Canada, Southern Alberta Branch. The Kidney Foundation respects
your right to privacy. If you no longer wish to receive this newsletter, please email your request to [email protected], or phone
1-800-268-1177 ext. 0. Any questions or comments regarding Living Well can be directed to: The Editor c/o Kidney Foundation,
6007-1A Street SW, Calgary, Alberta T2H 0G5
4
Tel: 403-255-6108
Email: [email protected]
THE KIDNEY FOUNDATION OF CANADA SOUTHERN ALBERTA & SASKATCHEWAN BRANCHES
WINTER 2015