September 2013

NON-PROFIT ORG.
U.S. POSTAGE
PAID
BUFFALO, NEW YORK
PERMIT NO. 61
ROSWELL PARK CANCER INSTITUTE
Elm & Carlton Streets • Buffalo, NY 14263
Return Service Requested
for a
SEPT 2013
Alden Middle School Student
Proves Tougher Than Cancer
w/o cancer
Read & Pass
SHARE this
publication with
your COLLEAGUES
and STUDENTS!
Sets out to show other patients that they are, too
Erin Matthewson, left
Thank you for joining
the fight at The Ride For
Roswell 2013!
Erin Matthewson, 11, knows life is hard.
The Alden Middle School student has
twice battled a rare cancer in her eye
tissue, called rhabdomyosarcoma.
Despite her time in the hospital, Erin
is determined to show other cancer
patients that they, too, can overcome
life’s obstacles.
A Christmas gift from her mother, Nancy, gave Erin just the idea she
needed. The gift was a gold-colored bracelet with the simple inscription “Life is tough,
but I am tougher.” Inspired by the quote, Erin plans to hand out these bracelets to
other pediatric patients so they, too, realize they are tougher than their diagnosis.
“It means a lot because they go through a lot of the same things I went through,” Erin
said. “They need inspiration because the road can get bumpy.”
In order to raise money to purchase the bracelets, both Alden Middle School and Nichols
Middle School, where Erin’s mother works, held fundraisers. The two schools raised
more than $1,400 for the project, which is enough to buy nearly 200 bracelets. Erin said
she is still in the process of ordering bracelets but plans to distribute them soon.
Kissmas Bash is Right
Around the Corner!
Before we know it, the snow will be falling and Yroswell
will be setting up for another year at Kiss 98.5’s annual
“The quote on the bracelet has inspired me because
life is tough,” Erin said. “There are many obstacles in
life, but you’re tougher than them. You can beat anything that’s in your way.”
Congratulations
to A.J. Walczak who raised
$9,555 as our top youth fundraiser!
means Childhood Cancer Awareness
Month is here! Turn inside to learn how
you can help promote awareness this
September. #GoldForKids
WHAT'S
INSIDE?
LEARNING:
Are Adolescents Overlooked
in Clinical Trials?
GIVING:
Bandits, Bisons … and Bald Heads!
COPING:
Warming Mind, Body and Spirit
with the Gift of a Blanket
Nearly 700 youth riders and 250 youth volunteers helped make this year’s
Ride a huge success, with more than $3.8 million raised in the fight
against cancer.
Kissmas Bash concert. How will we rock the arena for a
world without cancer this year? Stay tuned to Yroswell’s
Thanks again, and we hope to see you next year at Ride Weekend 2014,
Facebook page or Yroswell.com!
June 27 & 28!
26904 (8/13)
www.yroswell.com
facebook.com/yroswell
learning
visit yroswell.com/learning
IN PLAIN TERMS:
CLINICAL TRIAL
Are Adolescents
Overlooked in
Clinical Trials?
Dr. Lynda Beaupin, pediatric oncologist
at Roswell Park, meets with a patient.
Evidence suggests that enrollment in clinical trials can yield
better outcomes for the patients who participate. In fact, almost
all standard cancer therapies used today got their start in a
clinical trial. Why then are adolescents, or those ages 15 to 19,
less likely than younger pediatric patients to take advantage
of these options?
We need to improve how we
communicate with adolescent patients and
how to engage them in their care.
“
“Clinical trials have played a significant role in the increased
survival rates of both pediatric and adult oncology patients,”
explained Martin Brecher, MD, The Waldemar J. Kaminski
chair in pediatrics at Roswell Park and chief of the hematology/
oncology division at Women and Children’s Hospital of Buffalo.
“The improvement in cure rates for adolescent patients has not
been as dramatic. Adolescents sometimes ‘fall through the
cracks’ of pediatric and adult oncology, resulting in less access
to clinical trials. We are looking to bridge this gap.”
Roswell Park’s Lynda Beaupin, MD, pediatric oncologist
and assistant professor of oncology, is working with the Centers
for Disease Control and Prevention (CDC) to understand this
trend. Her research has identified a few possible underlying
issues, including:
• Low referral rates. Adolescent patients are less likely to
be referred to cancer centers that participate in National
Cancer Institute (NCI) - sponsored pediatric clinical trials.
• Limited availability. Very few trials are explicitly designed
to address the unique aspects of adolescent and young
adult patients or disease.
A clinical trial is a type of research study
that evaluates the effectiveness and safety
of new medical approaches. These studies
can test new medications, diagnostics,
therapy and medical devices.
Most treatments people use today are the
result of clinical trials. Clinical trials can help
to treat, find and diagnose cancer, or manage
cancer symptoms. Clinical trials are usually
available for all stages of cancer.
Each clinical trial has a principal investigator
who is in charge of the trial. The principle
investigator is usually a doctor, and this
person is responsible for creating the protocol,
or plan, for the trial.
For more information about the many clinical
trials currently offered at Roswell Park, visit
RoswellPark.org/clinical-trials.
SEPTEMBER IS National
Childhood Cancer Awareness Month
Go #GoldForKids!
As you and your students get back into the groove of a new school year, help us spread awareness by going Gold For Kids! Get your whole class—or even school— to wear gold in September
and share a picture on the Roswell Park Facebook page at Facebook.com/RoswellPark or on
any social network of choice with the hashtag #GoldForKids.
Learn more about #GoldForKids at RoswellPark.org/awareness or by searching #GoldForKids
on Facebook, Twitter or Pinterest!
Childhood Cancers
Cancer is the leading cause of
death by disease among U.S.
children between infancy and age 14
leukemias
other
childhood
cancers
Mortality rates for pediatric cancers
have declined by more than
Leukemias account for approximately
34 percent of all childhood cancers
over the past 30 years
Part of the solution, according to Dr. Beaupin, is better
communication.
“We need to improve how we communicate with adolescent
patients and how to engage them in their care,” Dr. Beaupin
said. “We also need to continue to raise awareness about
cancers among adolescents within the community so that
they may be referred appropriately.”
At Roswell Park, adolescent patients have access to clinical trials
through both pediatric and adult cooperative groups. In addition,
the Adolescent and Young Adult (AYA) Program strives to increase awareness about available resources.
To read more about Dr. Lynda Beaupin’s research, visit the AYA
category of the Cancer Talk blog at RoswellPark.org/CancerTalk.
Approximately 11,630
children in the U.S. will be
diagnosed with cancer in 2013
80 percent of children with cancer now
survive
for a Cure on July 28
The J.P. McGowan Concert
at Roswell Park
arch
benefited lung cancer rese
including drummer
ez,
nke
Mo
ss
Bra
the
d
and feature
g treated for
bein
is
who
Tyler Midgley (left), 18,
at Roswell Park.
ia
kem
Leu
tic
blas
pho
Lym
Acute
ez also played at the
Tyler and the Brass Monke
) Kickoff event in
Teens Living with Cancer (TLC
the Buffalo TLC
of
ch
laun
the
ting
July, celebra
.
chapter at Roswell Park
survival
years
other
childhood
cancers
&
central
nervous
system
Brain and central nervous system cancers account
for 27 percent of all childhood cancers
or more
Sources: American Cancer Society (ACS) and National Cancer Institute (NCI)
giving
visit yroswell.com/giving
Bandits, Bisons … and Bald Heads!
Goin’ Bald For Bucks Participants Get VIP
Treatment from Local Sports Figures
Twenty lucky students across Western New York had their heads shaved
by Buffalo Bandits and Buffalo Bisons players as part of Roswell Park’s
Goin’ Bald for Bucks program this year.
The players shaved heads, signed autographs and took pictures with
Bald for Bucks participants.
“I love the program because the kids do such a great job raising money
for something that has affected either someone they know or know
about,” said Luke Wiles, forward for the Bandits. “Smiling is contagious,
and raising money for people who need it makes me smile so giving
back is a top priority.”
For Bucks
shaves the head of a Bald
Bandits Forward Luke Wiles
more
ted
visi
th
Smi
Bandit Billy Dee
participant. He and fellow
s like Casey
iser
dra
fun
top
the
of
e
som
than 10 schools, including
dle.
entary and Sweet Home Mid
Middle School, West Elem
Want in on the fun? Go to baldforbucks.org and get started today!
rans of the
tarina are vete
Brooke and Ka alk, raising nearly $20,000
W
Bosom Buddiesfive years of participation.
over their
Friends Supporting Buddies
Orchard Park Teens Honor Memory of
Loved One at Annual Bosom Buddies Walk
Bosom Buddies Walk 2013
benefiting the
WNY Breast Resource Center
Saturday, September 14
East Aurora Ice Rink - new location!
BosomBuddiesWalk.com
Did you know that one in two men and one in three women will have cancer in their
lifetime? Cancer’s effects are felt not only by those diagnosed with the disease, but by
2012-2013 Highlights
their families, friends and loved ones as well.
Thank you to everyone who helped make the 2012-2013 Goin’ Bald
Brooke Driscoll and Katarina Ulsrud are all too familiar with this. Seven years ago
school year a great success. With more than 50 schools raising more
Brooke’s mother, Lisa, lost her battle with breast cancer. To honor her memory, the two
than $550,000, we are making a difference in the fight against cancer.
friends decided to get involved in the annual Bosom Buddies Walk for Roswell Park.
Congrats to all of your milestone efforts!
“We wanted to find a way to remember her and give back,” said Katarina.
Join us for
a candle lighting
ceremony in honor
or memory of
your loved ones.
Top Inaugural School: West Seneca West Middle School
Most Improved School: West Elementary School
1
#
Lebro’s Marks 25th Anniversary of Fall Classic Race
On September 21, Lebro’s Restaurant in Getzville will hold the 25th annual
Lebro’s Fall Classic Race. The race is part of the WNY Fabulous 5K Racing
Series and includes a 1-mile kids run. Held appropriately during pediatric
cancer awareness month, all proceeds from the event support Carly’s Club
Top 5 Fundraisers:
For the past five years, the Orchard Park teens have made it their goal to ensure that
no one in Western New York has to deal with breast cancer alone.
To date, they have raised almost $20,000 to support the WNY Breast Resource Center
at Roswell Park. The center helps patients and families navigate their cancer journey
2
The brother sister team of
Jonathan and Megan Stypa
from Heim Middle School
$10,185
4
Whitney Bishop from Victor High School
$4,500
#
3
#
#
5
#
from diagnosis and treatment to survivorship by providing a wealth of information and
support to all those affected by cancer. In 2012, the center provided $23,000 worth
of free wigs to more than 200 patients. The best part: the center is free and open to
Amy Williams from Sweet Home Middle School over $3,035
everyone, regardless of where you or your loved one
receives treatment. “We love to help people. Being able
to raise this money for such a great cause makes us feel
Meghan Dahlgren from Lake Shore High School
$3,026
good,” said Katarina.
at Roswell Park. Lebro’s has donated all funds raised from the Lebro’s Fall
Join Brooke and Katarina at this year’s Bosom Buddies
Classic Race to Carly’s Club since 2002, when Carly’s Club founder, Carly
Walk on September 14 at the East Aurora Ice Rink. You
Collard Cottone, lost her battle to medulloblastoma.
can sign up at BosomBuddiesWalk.org.
To learn more, visit lebrosrestaurant.com or call (716) 688-0404.
Register online at score-this.com.
WGRZ's Heather Ly, who is serving as the
honorary chair of the Bosom Buddies Walk:
"The cancer cause is near and dear to me,
and I want to help in any way possible."
Tree of
Hope
Lighting Festivities
Friday, December 6, 2013
4:30 pm - 6:30 pm
coping
visit yroswell.com/coping
GET INVOLVED!
Warming Mind, Body and
Spirit with the Gift of a Blanket
Volunteers create dozens of comfy
fleece blankets to be donated to
Roswell Park in memory of former
patient, Emily Belanger Garrant.
For more information on
Erica Foreman at
[email protected]
or search for “Kids in a Blanket”
on Facebook.
www.BosomBuddiesWalk.org
[email protected]
“Kids in a Blanket” held annually in memory of Emily Belanger Garrant
“My best friend passed away on March 1, 2005.”
“Kids in a Blanket” contact
BOSOM BUDDIES WALK
Erica Foreman, now 35, will never forget the difficult
time that followed the passing of her friend, Emily
Belanger Garrant, just eight years ago at the young
age of 24. Holding dear to her memory, Erica looked
for a way to remember Emily and give back to Roswell
Park Cancer Institute (RPCI), where Emily had been
a patient. In December of 2005, Erica organized an
event called “Kids in a Blanket” to do just that.
“At the time it was kind of trendy to make the fleece-tie
blankets,” Erica said. “One thing (Emily) always told me
when she was going through chemo
was that she was always really
cold. I just started thinking
blankets might be
comforting to some of
the families and some
of the children
who were going
through cancer
treatments like
Emily had.”
(From left to right) Michael Belanger, Erica Foreman,
Ramona Belanger and Katy Watrous organize the
"Kids in a Blanket" event each year.
Erica said the event started small, with about a dozen
friends and family members meeting at her mother’s
house. With the support of Emily’s family, the event has
grown exponentially in the years since and has moved
to RPCI.
“As Emily’s father, I am forever touched and impressed
by the continued support we get from friends and
family,” said Michael Belanger. “I am sure Emily is
proud that we can carry on her spirit of compassion,
hope, humor, family, her love of life and, mostly, sharing.”
Erica, the Belanger family and many other volunteers
now donate around 100 blankets every December
to RPCI. The group creates blankets in a wide variety
of colors and patterns to appeal to all of the pediatric
patients.
“They go in to the gift closet and there’s a whole wall of
all these blankets all tied up, and they get to pick one,”
Erica said. “It’s just nice to hear that the blankets are
appreciated and that they’re helping people. That’s our
overall goal— to help people through treatment and
provide a little comfort.”
CARLY’S CLUB
www.CarlysClub.org
[email protected]
Instructor Sue Hess, PhD, demonstrates a Healing Touch technique on program volunteer, Molly Gold. Healing Touch
manipulates the body's energy fields in order to treat patients' emotional, mental and physical symptoms.
Easing Cancer Symptoms
Through Love and Compassion
Roswell Park pilots heart-centered therapy program with pediatric patients
In the fight against cancer, Roswell Park
“Healing Touch is a little bit different than
Cancer Institute (RPCI) has an ever-growing
other energy modalities in that there is an
arsenal of treatments. Recently, two RPCI
emphasis on the practitioner coming from
employees introduced a heart-centered
a place of love and compassion for another
approach, called Healing Touch, which
human being,” Dr. Hess said. “So, what better
focuses on the mind and spirit of the patient,
way than to try this with family members and
as well as physical ailments.
extended family?”
Thanks to a Quality of Life grant from the
Aubrey Murphy, along with her son, Sullivan, 8,
Roswell Park Alliance Foundation, Sue
an acute myeloid leukemia patient, attended
Hess, PhD, an RPCI grants coordinator,
the eight-session program. According to
and Lynda Beaupin, MD, assistant professor
Aubrey, the program connected patients with
of oncology, held a pilot program in the
their parents or caregivers on a different level.
CARLY’S CROSSING
www.CarlysCrossing.com
[email protected]
GOIN’ BALD FOR BUCK$
www.BaldForBucks.org
[email protected]
THE RIDE FOR ROSWELL
www.RideForRoswell.org
[email protected]
TEAM CURE
www.TeamCure.com
[email protected]
TEAM CURE CHALLENGE
www.TeamCureChallenge.com
[email protected]
YROSWELL
www.Yroswell.com
[email protected]
complementary therapy over the winter.
TLC Program Update
“In this situation, sometimes you can’t do a lot
By moving one’s hands around a patient’s
for the person who’s going through it,” Aubrey
TLC, Teens Living with Cancer, celebrated its Buffalo debut on July 25! Teen cancer survivors
body or lightly touching the patient, the body’s
said. “You have to allow the doctors to do
in Western New York lit up the night at Hoyt Lake, danced to live music and popped dye-filled
energy field can be manipulated in order
what it is that they need to do. So, I was able
balloons while getting to know each other and the TLC program. In September, this peer-to-peer
to manage pain and other cancer-related
to help Sullivan and do something myself as
support resource at Roswell Park will have a master make-up class donated by Sephora and a
symptoms, Dr. Hess said. In the pilot program,
opposed to having to rely on the doctors.”
party in Brian Moorman’s PUNT Foundation suite at the Bills season opener. Want to be a part
email [email protected] to talk about ways you can help!
?
Green
Dr. Hess instructed a group of pediatric
patients, parents and caregivers, 30 people in
Continue reading about the Healing Touch
all, in the use and practice of Healing Touch.
pilot session at Yroswell.com/Coping.
of making this program a success in Buffalo? Contact Emily Marciniak at (716) 845- 4977 or
The opening of the Roswell Park Teens Living with
Cancer Center was celebrated on July 25, 2013.
Going
Send your email address to
[email protected] to
receive Yroswell News by email.