Leading the Fight - Alberta Children`s Hospital Foundation

SPRING 2016
F
Leading
the Fight
or more than 20 years, Dr. Aru Narendran
has been on the quest to help find new
and better cures for kids with cancer. “While
treatments exist for the majority of childhood
cancers, there are many which don’t respond
to current therapies and that just isn’t
acceptable,” he says with quiet determination.
“We have a responsibility as scientists to do
more for these kids and that’s what fuels my
work each and every day.”
Along with his colleagues at the Alberta
Children’s Hospital and Alberta Children’s
Hospital Research Institute, Dr. Narendran
is part of the world-wide fight against kids’
cancers. Recently, his lab made a discovery
that could lead to a potential breakthrough
treatment.
...more inside
“If this proves to be as effective as we think it might be, this
could be a game-changing drug in the treatment of a
wide range of pediatric cancers.”
- Dr. Aru Narendran, Alberta Children’s Hospital Research Institute
Children like Macey Bangsund inspire
the work of childhood cancer clinicians
and researchers in their quest for less
toxic cures for kids.
C
aitlin Bangsund knows all too well how
important it is for new treatments to
be found for kids with cancer. Her threeyear-old daughter, Macey, is currently in the
middle of a two-and-a-half year course
of chemotherapy for high-risk acute
lymphoblastic leukemia. Her journey has
been one filled with difficult side effects and
hospitalizations as the harsh medications
have wreaked havoc on her young body.
“It’s been heartbreaking to put Macey
through all this pain, but what choice did
we have?” asks Caitlin. “It was this or the
unspeakable. That just wasn’t an option.”
Knowing that parents around the world
are facing the same difficult path with
their children, Dr. Narendran has made it
the focus of his research to find less toxic
and more effective treatments for kids with
cancer. In his work as the director of the and even blood cancers. “It was quite
Preclinical Drug Discovery Laboratory for remarkable to see,” says Dr. Narendran. “If
POETIC (Pediatric Oncology Experimental this proves to be as effective as we think
Therapeutics Investigators Consortium), he it might be, this could be a game-changing
screens drugs and new compounds against drug in the treatment of a wide range of
tumours and cell lines in an attempt to find pediatric cancers.”
a “hit” – something that
Thanks
to
this
indicates the drug’s
important discovery,
“It’s
exciting
to
know
ability to kill the cancer
this drug is now in a
that this kind of work
cells.
Phase 1 Clinical Trial
I
is being led here
nspired by a patient
in the 11 POETIC
at the Alberta
hospitals across North
in Calgary.”
Children’s
Hospital,
America. Two children
- Caitlin, Macey’s mom
Dr. Narendran ran
are already enrolled
a course of 200
and it is anticipated
medications against an unresponsive tumour that it will be fully subscribed before
and found there was one that showed the end of the year. “We monitor these
particular promise. Further testing showed children very closely while they are taking
its efficacy against a wide range of tumours the medication,” explains Dr. Narendran.
THE FOUR PHASES
OF CLINICAL DRUG TRIALS
n PHASE I
Researchers test a new drug or
treatment in a small group of people
for the first time to evaluate its
safety, determine a safe dosage
range, and identify side effects.
n PHASE II
The drug or treatment is given to a
larger group of people to see if it is
effective and to further evaluate its
safety.
n PHASE III
The drug or treatment is given to
large groups of people to confirm
its effectiveness, monitor side effects,
compare it to commonly used
treatments, and collect information
that will allow the drug or treatment
to be used safely.
n PHASE IV
Studies are done after the drug or
treatment has been marketed to
gather information on the drug’s
effect in various populations and any
side effects associated with longterm use.
(clinicaltrials.gov)
Founded in 2003, POETIC is a prestigious network of 11 leading academic medical centres.
POETIC scientists work together to provide the collaborative and research strength
needed to complete intensive Phase I and II studies of novel treatment agents. By utilizing
the expertise and resources of its members, POETIC offers new possibilities and hope to
the field of pediatric oncology. Participating centres are:
ƒƒ Alberta Children’s Hospital
ƒƒ Arkansas Children’s Hospital, Little Rock
ƒƒ Arnold Palmer Hospital for Children/MD
Anderson Cancer Center Orlando
ƒƒ Penn State Hershey Children’s Hospital
ƒƒ Dana-Farber/Children’s Hospital Cancer
Center
ƒƒ Sidney Kimmel Comprehensive Cancer
Center at Johns Hopkins
ƒƒ MD Anderson Cancer Center
ƒƒ University of Texas Health Science
Center
ƒƒ Lucile Salter Packard Children’s Hospital,
Stanford
“It takes a huge team of people to ensure
that the trial is conducted exactly the same
way for all children at all centres.” Once
the results are fully analyzed, decisions will
be made as to if, how and when this new
therapy can be incorporated into existing
treatment protocols.
“It’s exciting to know that this kind of work
is being led here in Calgary,” says Caitlin. “I
know that treatment has come a long way.
There was a time there might not have
been hope for Macey, but thank goodness
there are brilliant people like Dr. Narendran
and his team who are looking to find new
answers. This trial means there may be new
hope for kids and families who face a cancer
diagnosis two or three years from now.
Giving parents hope for their children is an
incredible gift!”
ƒƒ Memorial Sloan-Kettering Cancer
Center
Community support for the pediatric
oncology program at the Alberta Children’s
Hospital as well as the Childhood Cancer
Research Program (CCRP) at the Alberta
Children’s Hospital Research Institute
makes advancements like this possible.
“Research is an investment in our kids’
futures,” explains Dr. Jennifer Chan, CCRP
Director. “This investment makes it possible
for our labs to be equipped with the people
and technology needed to do our work in
the most timely manner. As clinicians and
scientists, we are extremely grateful for the
confidence the community has placed in us
to continue the quest for answers.”
ƒƒ Phoenix Children’s Hospital
Integrated Research
Laboratory
Plans are underway to build a new
comprehensive lab where Calgary
scientists studying childhood cancer
can collaborate. It will bring together
researchers working to move new
treatments to the clinical trial phase
and others focused on improving
current therapies, such as blood and
marrow transplantation (BMT). This
innovative project will require support
from our generous community. For
more information on the work being
done in the field of childhood cancer
or to donate to this exciting initiative,
please visit:
childrenshospital.ab.ca/cancer
Cole’s
New
World
During his time in Camp Independence,
Cole Derkson was able to practice dayto-day life skills, like grocery shopping,
making new friends, cooking, riding
transit and writing a resume.
Think of the challenges faced by teenagers as they grow into young adults and learn to take
responsibility for themselves. Now, consider the extra challenges faced by teens affected by stroke,
cerebral palsy, autism or other serious health conditions as they work toward various levels of
independence. Thanks to community support, the Vi Riddell Children’s Pain & Rehabilitation Centre
at the Alberta Children’s Hospital is helping make that transition easier.
Camp Independence was designed to help
teenagers with disabilities learn to function
in the community as confidently and
productively as possible. The camp, which
is heavily based on goals set by the teens,
teaches important life skills to support their
independence such as grocery shopping,
cooking, getting around the city on public
transit, applying for jobs, managing their
own healthcare and making new friends.
However, the camp isn’t just about teaching
these skills, it’s about practicing them out
in the community while making important
contacts. As program coordinator Susan
McIlwain says,“It’s important for participants
to use these skills out in the world – not in
the hospital where they are comfortable
– as it’s pushing boundaries that will
help the teens develop confidence and
independence.”
C
ole Derkson was in the sixth grade and music therapists at the Alberta
when he suffered a heart attack. He Children’s Hospital to re-train his brain and
was without oxygen for 30 minutes, which body to do things he once knew how to do.
resulted in serious brain damage. Cole Specialists at the hospital helped him relearn
was kept alive by a device known as the how to use his hands so that he would be
Berlin Heart for more than a year, until a able to operate his wheelchair. Though
initially he wanted no part
transplant donor was found.
of Camp Independence,
His family was very grateful
“Cole was
he’d survived this traumatic
his mom, Vicky, “strongly
so proud
and terrifying chapter in his
encouraged” him to go into
life. At the same time, a new
the week-long program and,
of himself.”
and challenging chapter had
sure enough, he was quick to
- Vicky, Cole’s mom
just begun. Cole’s body had
come up with a list of goals
essentially shut down as he waited for his for himself and determined to reach them.
new heart and he was left without even A highlight of the camp for Cole was his
the most basic of motor skills. Completely first sleepover when he was able to spend a
bedridden and unable to lift his head off his night in residence at Mount Royal University.
pillow, he needed extensive rehabilitation.
“He was so proud of himself,” says Vicky.
With a positive attitude, Cole worked hard
with physio, physical, speech, occupational
“He had his own room, he stayed up until
two in the morning, and he just loved it.”
Vicky says the camp motivated Cole.
It showed him he could do tasks that
once seemed impossible. It gave him the
confidence he needed to try new things,
including asking a girl out on a date! It
also reassured him that he wasn’t alone.
Being out in the world can be isolating or
intimidating for someone with challenges
like Cole, says Vicky, but participating in the
camp let him know that he is not the only
one on this journey.
Particularly helpful for Cole was learning
to use Calgary Transit, as well as writing a
resume. Today, he is in Grade 12 at Bishop
Grandin High School and even got himself
a part-time job at a local gym – a position
that didn’t exist until he inquired about the
possibility and pursued the opportunity.
Vicky is very proud that Cole now takes
unsupervised trips around the block in his
wheelchair and is using a walker to get
around within their house. And, she knows
when she drops him off at the movie
theatre with his brothers or friends, he can
now enjoy the normal perks of being a
17-year-old.
Cole says Camp Independence can easily
be summed up in one word: “Awesome!”
Cole and his family shared
his inspiring story at the
Country 105 Caring for Kids
Radiothon in February 2016.
You can hear more about his
experience at Independence Camp at:
childrenshospital.ab.ca/
cole
“There’s my
hospital!”
Every time 8-year-old Alexa and her family drive by the colourful
building on the hill, she makes this happy exclamation. That’s because
this spunky little girl has been cared for at the Alberta Children’s
Hospital since before she was born.
D
uring Cindy Castillo’s seven-month
ultrasound, she was told that her baby
had a life-threatening heart condition. “ We
were terrified those first few years as Alexa
had to undergo a number of open heart
surgeries to help her heart function,” recalls
Cindy. “Thanks to amazing care, she’s come
through all of that pain and still has a huge
smile on her face every time we come to
the hospital.”
Today Alexa is a star soccer player and
loves making people laugh. However, like
other kids born with heart defects, she
continues to be at risk for heart dysfunction,
complications with her circulation, problems
with irregular heart rhythm and longer term
issues with the health of her lungs and liver.
“Alexa’s specialists keep a close eye on
her heart as she grows so that they can
intervene as soon as possible should any
issues arise,” says Cindy. “The fact that Alexa
loves and trusts them so much makes her
appointments and all those tests way easier.”
“My nurses and doctors are so nice,” beams
Alexa with her trademark smile. “I’m always
happy to see them and they take such good
care of me.”
Kids like Alexa are the reason cardiology
experts at the Alberta Children’s Hospital
are working hard to find new and better
ways to help children with heart disease
survive and thrive in spite of their conditions.
Over the last 25 years, the pediatric
cardiac team has developed crucial
expertise, particularly in early life-saving
diagnosis and intervention, cardiac imaging,
electrophysiology (correcting abnormal
heart rhythms), and innovative research.
And now, with generous support from CP
through the CP Women’s Open taking place
in Calgary this summer, kids relying on care
from the children’s cardiology program at
the Alberta Children’s Hospital will benefit
from even more leading-edge research.
Community donations through the CP Women’s Open
will help fund innovative research:
„„ Work to develop a “liquid biopsy” for the non-invasive detection of transplant
rejection.The team’s goal is to develop a blood test that would replace the invasive
tissue biopsies currently required to determine if a child’s transplanted heart is
being attacked by his or her immune system. This rejection, if left undetected and/
or untreated will destroy the new heart tissue.
At the CP Women’s Open this summer,
Alexa will be an ambassador for all
kids cared for by cardiac experts at the
Alberta Children’s Hospital.
„„ The ‘liquid biopsy’ approach, combined with advanced DNA sequencing
technologies at the Alberta Children’s Hospital Research Institute, can also be
used to develop a blood test to make a genetic diagnosis for congenital heart
disease while a baby is still in utero. If successful, this blood test could replace
invasive amniocentesis, which carries a risk of miscarriage.
Get closer to the LPGA’s best
at the 2016 CP Women’s Open.
August 22-28, 2016
Priddis Greens
Golf & Country Club
Buy your tickets now:
cpwomensopen.com
Lydia Ko,
2015 CP Women’s Open Champion
All funds raised through the tournament will support pediatric cardiac care and research
at the Alberta Children’s Hospital.
CP will donate $5,000 for every birdie made on the 18th hole during tournament play.
You can cheer on the players from the 18th Green CP Fan Zone. Upgrade your ticket
online or at the tournament for $20 and CP will match your donation!
CP will double your donation!
The Alberta Children’s Hospital Foundation is grateful to be the
official community charity for this summer’s CP Women’s Open.
Through the CP Has Heart campaign, CP will generously match
all donations made online between April 1 and August 28, 2016.
It’s easy:
1
Visit childrenshospital.ab.ca/cpwomensopen
2
Make a donation to help kids like Alexa benefit from
the best in cardiac care and research
3
CP will match your donation
4
Your gift will be twice as nice!
Healing Art
M
any people know the community funds a wonderful program
at the hospital incorporating therapeutic arts into children’s
recovery. Not only does this give kids the chance to express
themselves in ways words cannot convey, they’re also able to put
their pieces on display for others to enjoy.
In addition to the delightful creations made by patients, walls
throughout the hospital are also adorned with a vast collection of
donated artwork that any gallery would be proud to have. With
the help of Fortune Industries, Webster Galleries, Masters Gallery
and many other generous companies and individuals, the hospital
is now home to 475 beautiful pieces of original art valued at over
$500,000.
Child Life Art Specialist, Deb Wozny, says the collection is an
important addition to the hospital. “Beyond adding a colourful
touch to the hallways, units and clinics, the art serves as a source
of distraction, inspiration and meaningful conversation between
patients and their families or caregivers – all good things to have
on a healing journey.”
Here is a small sampling of the art found throughout the hospital:
LANNY by Jane Cameron
Donated by her family
J
ane Cameron was born in High River in 1949. While her
parents were told that their daughter had Downs Syndrome
and would not aspire to much in her life, with their support Jane
was given every opportunity to thrive – and thrive she did. An
accomplished swimmer who medaled in the International Special
Olympics, Jane also had a remarkable talent for weaving original
tapestries. Over the years, her colourful work was commissioned
by the Prime Minister’s Office, Montreal’s Mirabel Airport and
Readers Digest Canada. After her passing in 2000, the family
donated two pieces to the hospital including “Lanny” found on
display outside the oncology unit.
GUMBALL BUTTERFLY designed by Franz Spohn
DOGS by patients at the Alberta Children’s Hospital
F
W
Donated by Dr. Deepak Kaura, former Chief of Diagnostic
Imaging, Alberta Children’s Hospital
or five years, Farah and Amyn Kanjee hosted Sunshine Gala –
a celebration of the life and spirit of their 5-year-old daughter,
Sofia Zara Kanjee who sadly passed away in 2009. Inspired by
the strength of the Kanjee family in the face of tragedy, guests
of the Gala rallied to raise over $500,000 to support life-saving
care initiatives in the Pediatric Intensive Care Unit at the Alberta
Children’s Hospital. At one of the events, they also joined together
to create a fabulous masterpiece made entirely of gumballs! The
custom-designed butterfly was auctioned off to Dr. Deepak Kaura.
Knowing that it would be a source of joy and amazement to
patients and families, he donated it back to the hospital where
it now hangs in a sunny hallway leading to the hospital’s Healing
Gardens.
Created with support from the Therapeutic Arts Team at the
Alberta Children’s Hospital
hen a young patient tells her they are not artistic, Deb
Wozny is thrilled to accept the challenge. Armed with
enthusiasm and lots of inspiration, Deb leads them in the process
of painting or creating a piece while they’re in hospital as part
of their healing and recovery. It’s not long before they have a
beautiful work of art in front of them and they’re declaring with
pride, “I did it!”. One beloved series of paintings created by kids
helped by the hospital is called “Dogs” and welcomes people as
they enter Unit Two.
“These budding artists all used different forms of inspiration –
from photos of their own dogs to pictures from calendars,” says
Deb. “It was wonderful to see these playful faces take shape and
form this beautiful collection for kids to enjoy.”
With support from their entire family,
Blair and Marlene Mason are building
a legacy in honour of their late
daughter, Cori.
Generosity i s all in the family
C
ori Wildeman worked at the Alberta
Children’s Hospital in speech therapy
and with children who have cochlear
implants. After she passed away, her parents,
Blair and Marlene Mason, felt inspired to
give back to the place that meant so much
to her. This year, an endowment fund the
Masons set up to honour Cori will reach
$100,000.
nieces and nephews, siblings, cousins and
aunts and uncles. From the proceeds of a
lemonade and cupcake stand run by Cori’s
niece and nephew, Francesca and Christian,
to the remarkable $30,000 raised by her
son, Jeff, who ran a half marathon in her
honour, family members have each found
their own ways to support this important
facility.
“She loved her work, she loved going to
the hospital – it was her special place,” says
Marlene.
“The whole family is behind us and we’re
delighted,” says Blair. “It’s a great way for us
all to include Cori in our lives going forward.”
“They’re wonderful people at the Alberta
Children’s Hospital,” adds Blair. “It doesn’t
matter which department you go into
there.”
Blair and Marlene have also generously
committed a gift of life insurance to benefit
the hospital – a meaningful way for their
daughter’s legacy to live on even beyond
their own lifetimes. Fitting for a couple
who have inspired gifts from all generations
of their family, the Masons feel confident
their support will continue to help kids and
families in need for generations to come.
Shortly after Cori passed away, her parents
and her family encouraged others to
support brain and mental health initiatives
at the Alberta Children’s Hospital and
were humbled when more than $11,000
was raised. The inspiration trickled down
throughout the Mason and Wildeman
families with three different generations
doing whatever they could to help the kids
and families who rely on the care at the
hospital.
Now gifts big, small, and everything in
between have come in from Cori’s children,
“Age doesn’t matter,” says Marlene.“Anyone
can give, and every gift makes a difference.”
For more information about legacy giving
at the Alberta Children’s Hospital,
please visit
www.childrenshospital.ab.ca/
legacygifts
Hope
Family of
Tea
Thursday, May 26, 2016
Tea & Program 2:00 pm
Hospital Tours 3:00 pm
Join us for an inspiring
afternoon featuring fine
teas and refreshments.
Hear about life-saving care and
research that generous people
like you make possible at the
Alberta Children’s Hospital.
To reserve your space,
please RSVP by May 19 to
Heather at 403-955-8847 or
[email protected].
Trip of a lifetime for
Champion Child
She may have been surrounded by Disney princesses and celebrities,
but it was Payton Langenau who was treated like royalty during a
celebration in Orlando honouring brave kids like her.
Today, Payton is healthy and enjoying
the excitement of grade one. Thankfully,
she doesn’t remember those frightening
times but her parents absolutely do. They
appreciated the chance to meet and share
their life-altering experience with other
families like theirs during the Champions
Celebration – families of children alive today
thanks to community-supported hospitals.
Payton’s family was inspired by everyone
they met on the Champions Trip,
including Children’s Miracle Network
co-founder, Marie Osmond.
R
epresenting 94,000 kids and families who
rely on care from the hospital each year,
six-year-old Payton is this year’s Champion
for the Alberta Children’s Hospital, part of
Children’s Miracle Network Champions
presented by Walmart.
Payton and her family have graciously
agreed to help thank and inspire donors
in our community. As part of their duties,
they also had the chance to represent our
hospital at a week of fun-filled festivities in
Toronto and Disney World, and spend time
with other young ambassadors from across
Canada and the United States.
Her Champion Child honour is well
deserved. When Payton was two years old
she came down with flu-like symptoms
that turned out to be a life-threatening
bacterial infection called Invasive Group A
Strep Toxic Shock Syndrome. The infection
caused her organs, including her heart and
lungs, to shut down. With all traditional
treatment options exhausted, specialists
relied on community-funded technology to
help save her – specialized heart and lung
bypass technology called Extracorporeal
Life Support (ECLS).
“Getting to know the other Champion
families was probably one of the highlights
of the trip for us,” says Payton’s mom, Betina.
“In seven days, we formed a strong bond
with a lot of families. All of these children
have made such a difference. Payton met
new friends – she talks about them a lot
and wants to go visit them!”
Despite getting the chance to hang out
with superstars like host of America’s
Got Talent, Nick Cannon, and Children’s
Miracle Network co-founder and singer
Marie Osmond, the Champions were the
ones signing autographs and treated like
celebrities during the festivities. Betina says
she will always remember a very special
ceremony during which each child was
announced on stage to receive a medal
symbolizing their strength and courage.
Every single survivor received thunderous
applause.
“It was such a proud moment,” says Betina.
“As every child walks across the stage, there
is a standing ovation. It’s an outpouring of
emotion and pride not just from a parent to
their child, but from every parent to every
child.”
For Payton, besides meeting new friends, if
you ask her what other memory stands out,
she’s quick to say, “Meeting Rapunzel!”
The Alberta Children’s Hospital
Foundation is grateful for the generous
support of Children’s Miracle Network
corporate partners in our community.
APRIL
Pizza 73 Slices for Smiles
www.pizza73.com
n
MAY 2 - JUNE 5
Costco Balloon Icon and
Fundraising Campaign
www.costco.ca
n
MAY 5 - 27
Walmart Balloon Icon and
Fundraising Campaign
www.walmart.ca
n
MAY 12 - 29
KFC Balloon Icon and
Fundraising Campaign
www.kfc.ca
n
JUNE 1 - 30
TD Automated Monthly Donor
and Grassroots campaigns
www.tdcanadatrust.com
n
AUG 11
DQ Miracle Treat Day
www.miracletreatday.ca
UPCOMING EVENTS
For information about these or other events to support the kids at the Alberta Children’s Hospital,
please visit childrenshospital.ab.ca/events
n APRIL 23
The Eye Ball
n APRIL 29
The Metamorphosis presented by the
Alberta Children’s Hospital Foundation
Youth Council
n MAY 1 – MAY 31
ATB Teddy for a Toonie
n MAY 9
Kinsmen Lotto for the
Alberta Children’s Hospital launch
n JUNE 18
Cruise for Cancer
Charity Car Show
n JUNE 25
ECL Choppers for Charity Ride
n OCT 22
Seva Gala
n DEC 1
Candy Cane Gala
n JULY 9
56th Annual Chinook Centre
Stampede Breakfast
n JULY 24
SunRype TriKids Triathalon
n MAY 29
Scotiabank Calgary Marathon
n AUG 31 – SEPT 4
Shaw Charity Classic
Birdies for Kids
n JUNE – AUGUST
Skydive Big Sky
Brave Bears for Kids Campaign
n SEPT 25
6th Annual
Walk for Thomas n JUNE 15
JLC Poker Classic
Tickets available on Eventbrite!
n OCT 15
Building Hope for Kids Gala
“A Night in Italy” TICKETS ON SALE MAY 9th
Watch your mailbox!
Return undeliverable Canadian address to:
2888 Shaganappi Trail NW
Calgary, AB T3B 6A8