Give Hope - Children`s Hospital of Michigan Foundation

FALL 2015
Give
Hope
Research advances and
supportive care give hope to
pediatric cancer patients.
chmfoundation.org/GiveHope
Through our efforts to improve children’s health and wellness,
children have more days to play, nights to dream, and time - to just to be kids.
LETTER FROM THE PRESIDENT
Board of Trustees
Officers
Matt Friedman, Chair
Dear Friends,
Cynthia Ford, Vice Chair
September is Pediatric Cancer Awareness Month, designated several decades
ago by Congress through the advocacy of the American Childhood Cancer
Organization, a group of parents of pediatric cancer patients. They sought to
raise awareness of the cancers that affect mainly children and to raise money
for medical research and family support.
Fred Minturn, Vice Chair and Treasurer
The Children’s Hospital of Michigan Foundation is an important partner
with Children’s Hospital of Michigan in advancing new treatments, medical
research and supportive services for pediatric cancer patients. Children’s
Hospital of Michigan has the oldest and largest pediatric hematology/
oncology program in Michigan and was ranked highest in the state in the
U.S. News & World Report’s 2015-16 Best Children’s Hospitals ranking.
Michael Ben
Philanthropic support enables the Foundation to fund innovative research
into the causes of pediatric cancer, including genetic abnormalities, and
explore better treatments, such as antibody therapy. Cancer treatment can
be a lengthy, debilitating and frightening journey, especially for a child. So
we are pleased to fund programs that help patients and their families cope
during cancer treatment. Whether children choose toys from the Bottomless
Toy Chest, craft a Beads of Courage necklace or learn karate, these special
activities are a welcome distraction from blood tests, IVs and medical exams.
Johnny Ginopolis
We think you will be inspired by the stories of young cancer patients and
survivors who met at the annual Celebration of Life. For patients, family
members, and hospital staff, meeting former cancer patients now in their 20s,
30s and 40s, some with their own children, who are not only surviving but
thriving, gives everyone hope. Thank you for your generous gifts that help
combat this life-threatening disease and enable patients to face cancer with
extra care and support.
Edward C. Levy, Jr.
Rita Margherio, Secretary
Trustees
John D. Baker, M.D.
James F. Carr, Jr.
Tom Constand
Douglas M. Etkin
Glen Donovan
Larry E. Fleischmann, M.D.
Peter Ginopolis
Larry Gold
Brian Hermelin
Mable V. Jones, Ph.D.
Jack Krasula
Steven R. Lefkofsky
Joseph Lelli, M.D.
Steven Lipshultz, M.D.
Michael J. Madison, CFA
Anita Penta
Dick Purtan
Derek J. Sarafa
Lyle M. Wolberg, CFP
Sincerely,
Tony Werner
President & CEO
On the cover:
Brandon, 10 years
old, treated at
Children’s Hospital
of Michigan for
acute lymphoblastic leukemia.
Brandon has been
in remission since
June 6, 2011.
When
children
have cancer
E
very year, 15,780 young
people are diagnosed with
cancer in the U.S. and it
is the leading cause of medical deaths
among American children. Leukemia
and brain tumors are the most
common types of pediatric cancer.
Cancer has only a short period of
development in children, in contrast to
adults who may be subject to a lifetime
of environmental conditions that can
cause cancer, Dr. Jeffrey Taub, division
chief of oncology at Children’s Hospital
of Michigan (CHM), explained. Even
a cancer that is found among both
children and adults—leukemia—has a
different molecular structure in each
group. Some cancers, such as lung and
pancreatic cancer, among others, are
not found in children.
Treating children with cancer poses
special challenges because of potential
side effects that may affect growth and
development. “We are concerned about
the quality of life after treatment. We
want to minimize the effects on the
child’s appearance, learning ability
and fertility, as well as reduce the risk
of developing other cancers,” said Dr.
Taub. Cancer treatment has become
more effective in recent years and
he follows many patients into their
twenties and thirties, “happy to see
them as productive citizens.”
In 2011, 12 year old Alex Craven was
diagnosed with stage 4 Lymphoma. Thanks
to CHM physicians like Dr. Taub (pictured
above with Alex), Alex has been cancer free
since 2012.
A Childhood Cancer Survivorship
Program at CHM provides vital
follow-up care for potential medical
and psychological side effects of
treatment. This program is available
to children, teenagers and adults who
were pediatric cancer patients and
whose treatment was completed at
least two years previously.
3
WHEN CHILDREN HAVE CANCER
Toys, beads and karate
help young patients
cope with cancer
C
ancer treatment subjects children to many unfamiliar
and unpleasant experiences—seemingly endless “pokes”
for blood tests and intravenous (IV) medications,
ongoing examinations and tests, and too much
time spent in clinics and hospital rooms. Anxiety and fear are
common responses to treatment, underscored by a feeling of lack
of control over their lives.
Fortunately, thoughtful and generous parents as well as health
care professionals understand the need for distraction and upbeat
activities during cancer treatment. The Children’s Hospital of
Michigan Foundation supports a range of coping programs including
Beads of Courage, the Bottomless Toy Chest, the annual Celebration of Life,
and Kids Kicking Cancer. Each one brings smiles to young patients who are
coping with discomfort and pain.
Seven year old Camauri’s day
was brightened by a visit from the
Bottomless Toy Chest.
The Bottomless Toy Chest brings happy
moments to cancer patients
When Mickey Guisewite and John
DeCerchio’s son, now recovered,
underwent lengthy treatment for
leukemia in 2009, they were able to
be with him throughout his time
at Children’s Hospital of Michigan
(CHM). Guisewite brought Legos,
train sets and other toys to distract him
from his illness. However, she noticed
that many young patients did not have
a family member or other adult for
comfort and support because they had
to be at work.
Bottomless Toy Chest Volunteers Marie
Selander and Linda Kraft.
Guisewite and DeCerchio created the
Bottomless Toy Chest, a nonprofit
organization, to provide each young
cancer patient at CHM with a personal
gift that can be enjoyed even in a
hospital. New donated, cellophanewrapped puzzles, craft kits, iTunes cards
and toys appropriate for children of all
ages are delivered by trained volunteers
twice a month to cancer patients at
CHM. Last year approximately 1,500
toys and activity items were distributed.
The Children’s Hospital of Michigan
Foundation has helped fund the
Bottomless Toy Chest’s activities at the
hospital for several years.
“We want them to feel like normal
children and engage in something
besides cancer,” Guisewite explained.
Another feature is the Distraction Toy
Program that provides little gifts such
as silly putty, sticker books and Rubik’s
cubes in the outpatient Hematology/
Oncology Clinic.
To Guisewite, the ability of the
children to choose their own gifts is
very important at a time when they
have little control over their lives.
Family members and staff agree that
the toys are a welcome and calming
influence to counteract pain and
discomfort. The gifts “lighten their
load a little,” said Guisewite.
THE RESEARCH QUEST FOR BETTER TREATMENTS
Beads of Courage recognizes
each patient’s challenges
A cancer diagnosis is devastating and the path for
treatment and recovery can be long and frightening,
especially for a young person. The Beads of Courage
program enables children and teens to record their
progress by making a personalized bead necklace with
color-coded beads for specific aspects of treatment.
Creating the necklace is both a welcome distraction
from onerous tests and treatments, but also a
personal tangible record of the journey from patient
to survivor when a purple bead is added to show that
treatment is complete.
“The beads are a tangible way to see courage and
bravery. Each bead has a meaning and they earn every Cancer patient Ashleigh
one of them—from daily pokes (black beads) to days showing off her cancer
journey through her Beads
of chemo (white beads) to chest tubes and catheters
of Courage.
(turquoise), each child will be able look through their
necklace and remember how brave they were,” explained Wendi Henning,
clinical social worker in the division of hematology/oncology at Children’s
Hospital of Michigan.
The Children’s Hospital of Michigan Foundation supports the Beads of
Courage program for patients at Children’s Hospital of Michigan.
“It is amazing the impact something as simple as
a bead can have on a child during such a complex
time. While she didn’t understand everything going
on during her treatments, she knew that each visit to
CHM meant a new bead, and that made her smile.”
Kristina Tranchemontagne, mother of Beads of Courage patient Ashleigh
Celebration of Life gives hope for a healthy future
For the past 20 years, a large group of current and former cancer patients,
their families and the staff members who cared for them at CHM have
gathered together to celebrate health and survival in conjunction with
National Childhood Cancer Survivor Day. This year’s Celebration of Life
brought together 300 current and former pediatric patients, along with
approximately 900 family and hospital staff members for games, contests,
prizes and refreshments at C. J. Barrymore’s on June 6, 2015.
Kids Kicking Cancer
helps patients manage
fear and pain
Young cancer patients are learning
martial arts as a way to control
their fear and pain, taught by Rabbi
Elimelech Goldberg, who has a black
belt in the martial arts. Group and
individual lessons in martial arts,
breathing techniques and meditation
help patients cope—“turning victims
into victors.” Rabbi Goldberg first
tried these techniques while working
at a camp for children with cancer
and saw their positive impact,
subsequently starting a nonprofit
organization, Kids Kicking Cancer,
to expand the program’s reach. The
Children’s Hospital of Michigan
Foundation provides funding so that
Kids Kicking Cancer is available to
all patients who are battling serious
illnesses at CHM.
Dr. Steven Lipshultz
(back) poses for a
photo with attendees
at this year’s
Celebration of Life.
Funded by Children’s Hospital of Michigan Foundation, this
is the biggest childhood cancer survivorship celebration in
the state and believed to be the largest in the U.S.
Dr. Jeffrey Taub, division chief of oncology at CHM,
has treated many of the current and former patients
who attend. Many are now in their 20s, 30s and
40s, some with their own children. “It’s important
for those being treated to see healthy kids and
survivors. It provides encouragement and hope
that they can become normal,” he explained.
OPE N F O R M O R E I N S I D E
9
WHEN CHILDREN HAVE CANCER
Research explores the
mechanisms of cancer in the
quest for better treatments
A
dvancing medical knowledge is fundamental to the Children’s Hospital of Michigan
Foundation’s mission and cancer is a particular focus. With
assistance from the Foundation, researchers at Children’s Hospital of
Michigan (CHM) and Wayne State University School of Medicine (WSUSOM)
study the causes of pediatric cancer and explore promising new treatments.
Medical research is a lengthy process. From basic research in a laboratory to
possible animal studies and eventual clinical trials with patients, the path is long
and challenging for researchers. Government programs typically don’t cover
the costs of early research and pilot studies, and federal funding for medical
research has been declining. As a result, philanthropy is increasingly important
for researchers, who benefit from the generosity of local foundations and
endowments who seek to improve pediatric health care.
Local foundations and individuals support vital preliminary research
The Children’s Hospital of Michigan
Foundation has developed strong
partnerships with local organizations
and individuals interested in supporting
pediatric cancer research. One example
is Kids Without Cancer, a nonprofit
organization originally established as
Leukemia, Research, Life, Inc. by the
parents of pediatric cancer patients. This
nonprofit organization has established
an endowment with the Children’s
Hospital of Michigan Foundation that
has provided more than $2 million for
Dr. Taub’s research into the causes of
childhood leukemia.
Dr. Taub is using zebrafish in laboratory
studies to explore whether pre-leukemic
genes are affected by exposure to
certain chemicals. He explained that
one theory is that leukemia develops
in a two-step process with the “first
hit” being a leukemic gene and a
“second hit” possibly resulting from
environmental exposure to certain
chemicals or infections.
Chris Vandenberg, executive director
of Kids Without Cancer, described the
potential impact of the research: “If
you find that link, it opens the door for
so many other things. They are testing
a known carcinogen but what about
testing other substances?”
Blood Smears from Adult Zebrafish
The Foundation also has several
endowed funds that support the work of
Dr. Taub and other leading physicians
and researchers at CHM and WSUSOM.
For example, endowment funds that
have supported the work of Dr. Taub
were created by two local businessmen
and Foundation Board members, John
Ginopolis and Edward C. Levy, Jr.
Pediatric research has also benefited
from the generosity of the late Charles
O’Brien, who was the Chairman of the
Board for the Detroit Medical Center.
“He was a successful businessman and
wanted to give back,” explained Dr.
Taub. O’Brien endowed the Ring Screw
Textron Chair of Pediatrics at Wayne
State and CHM, which is named for his
company. The endowed chair is held by
Dr. Taub and helps support pilot studies
and also fosters collaboration with
researchers at other institutions, Dr.
Taub explained.
Allan and Ellie Bittker established a
foundation to support research for
pediatric cancer after their six-yearold son, Matthew, lost his battle with
neuroblastoma in 2007. Working with
the Children’s Hospital of Michigan
Foundation, their contributions
helped to fund pre-clinical studies
of immunotherapy, a potential new
treatment using the patient’s own
antibodies, to fight neuroblastoma,
a non-brain solid tumor that is very
difficult to treat. Antibodies are the
Ryan Thummel, Ph.D. observing zebra
fish activity.
body’s own defense mechanism against
infection but they do not normally work
against neuroblastoma.
Maxim Yankelevich, MD, assistant
professor at WSUSOM and an
oncologist at CHM, and Lawrence G.
Lum, MD, DSc, professor of oncology
medicine at WSUSOM and scientific
director of immunotherapy and bone
marrow transplant for the Karmanos
Cancer Institute, have developed a
therapy which removes, strengthens
and multiplies the patient’s antibodies
and then manipulates them to fight
neuroblastoma cancer cells. Their
research was recently funded by the
National Cancer Institute (NCI) for
Phase I and II clinical trials and their
antibody therapy is now being tested
with patients at CHM and Memorial
Sloan Kettering, a leading cancer center
in New York.
In 1973 John and Marion Ginopolis lost their 4 year old son, Georgie, to hemolytic
anemia. “As a parent you never think it is going to happen to you, but when it does
there are multiple ways you can react. My wife and I chose to take our sadness
and do something positive,” shared John. The Ginopolis’ have established two
endowment funds at the Foundation focused on benefitting hematology/oncology
research. “It is a good feeling knowing that we have put something in place that will
continue to give back,” he continued.
“Our ultimate dream
would be to find a cure for
cancer and make the lives
of all children better.”
DONOR
SPOTLIGHT
John Ginopolis
Investigating better treatments for Lymphoma and Leukemia
Sureyya Savasan, MD, a hematologistoncologist at CHM, director of the
CHM pediatric blood and transplant
program and pediatrics professor at
WSUSOM has received multiple grants
from the Children’s Hospital of Michigan
Foundation to investigate cancer, related
diseases and potential therapies at the
cellular level.
Dr. Savasan and Dr. Meret Henry,
associate professor of pediatrics, are
investigating potential new treatment
options for Hodgkin lymphoma. “While
chemotherapy can cure three-quarters of
patients with Hodgkin lymphoma, there
are significant side effects. Minimizing
chemotherapy and combining it with
immunotherapy may improve outcomes
while reducing the unwanted side
effects,” said Dr. Savasan.
In addition, Dr. Savasan is conducting
research with Dr. Janet Poulik, a
Lymphokine-activated killer lymphocytes (smaller cells - red arrow heads) are attacking
Hodgkin lymphoma (HL cells - green arrow heads) [A] and inducing tumor cell suicide
[B & C].
pathologist and assistant professor at
WSUSOM, on cell samples from patients
who have had bone marrow transplants,
which is often used to treat lymphoma,
some solid tumors and leukemia. They
seek to better understand graft versus
host disease, a common and potentially
serious complication of allogeneic bone
marrow transplantation (BMT).
(Left) Sureyya
Savasan, MD
(Below)
Dr. Savasan,
Dr. Henry and
Biomedical
Engineer, Manisha
Gadeel, discuss
recent findings.
A misplaced gene may
be a risk factor for
Leukemia
Recently, CHM researchers Madhvi
Rajpurkar, MD, division chief of
hematology, Michael Callahan, MD,
assistant professor of pediatrics, and an
international research team identified
a key gene mutation that can trigger
acute lymphoblastic leukemia (ALL)
and several other types of cancer.
The Children’s Hospital of Michigan
Foundation supported the early phases
of this research.
Almost a decade ago, Dr. Rajpurkar
treated a child for low blood platelets
(congenital thrombocytopenia). The
patient and an aunt later developed
ALL. Several family members were
then diagnosed with low blood platelets
Madhvi
Rajpurkar, MD
as well. This family’s medical condition
was the catalyst for an investigation to
isolate and identify the mutation in a
gene (ETV6) that regulates growth in
bone marrow.
This breakthrough resulted in a
“new association between a genetic
mutation and leukemia that can be
screened for and is hugely important,”
said Steven Lipshultz, MD, CHM
Pediatrician-in-Chief and chair of the
Wayne State University Department of
Pediatric Medicine.
Hyundai Hope on Wheels grant provides
$250,000 in research funding
Cancer research at CHM has benefited from strong support from the
Hyundai Hope on Wheels program—pediatric cancer research funded across
the country by more than 820 Hyundai Motor dealers in the U.S. Dr. Taub has
just received a $250,000 research grant from this program to study potential
new treatments for acute myeloid leukemia (AML). This is the fourth time a
physician at CHM has been awarded this honor.
Using leukemic cell lines, Dr. Taub will study the potential impact of several
new chemotherapy drugs being developed for adult cancers in conjunction
with an agent currently used for pediatric AML. If successful, this preclinical
work will be a foundation for translation into clinical trials with patients.
During a signature
handprint ceremony,
pediatric cancer patients are
allowed to paint their hands
and make a handprint
on a white Hyundai.
Give
Hope
Children with cancer rely on
the generosity of people
like you to provide funds
that offer support
as they battle one of the toughest
fights of their lives.
Please use the remit envelope
found in this issue or visit
chmfoundation.org/GiveHope
to make a donation today.
Your donation matters.
Save the Date
Nov. 4, 2015
MEDTalks: A Pediatric
Oncology Conversation
8
LEADERS
FOR
LEADERS FOR KIDS UPDATE
Third Annual Summer Recess
was a huge success!
All proceeds from Summer Recess 2015 will benefit the Children’s Hospital of
Michigan Foundation, restricted to the Child Life Fellowship program in the Bone
Marrow Transplant Unit at Children’s Hospital of Michigan.
Children receiving medical care face many challenges and feel as if they have very
little control of what is going on around them. Child Life Services helps patients
and families reduce stress and anxiety, cope more effectively with the hospital
environment and normalize their healthcare encounters. Child Life Fellows
provide multiple interventions and services for children, including preparation
and support for procedures, non-pharmacological pain management, diagnosis
education, medical play, therapeutic play, emotional support, family/sibling
support and bereavement support.
Stay tuned for details on Cheers for Children, Leaders For Kids’ winter event
coming December 2015. If you are interested in joining the team or would like
to know more about how you can get involved with Leaders For Kids, please visit
www.LeadersForKids.com or email info@leadersforkids.com
Leaders For Kids
Advisory Board
Kristina Berger
Gregory Bockart, Jr.
Alix Chapie
Ajay Chawla
Jon Colman
Charles Dabrowski
Amanda Fisher
Milan Gandhi
Michael George, II
Peter Ginopolis
Jaime Hayes
Lorron James
Gina Karamanian
Dr. Philip Khoury
Dan Milan
Jason Peach
Derek Sarafa
Adam Speck
Cassandra Varcoe
Kayla Varcoe
LEADERS
FOR
A special thank you to our title sponsors: Ajay Chawla, Detroit Flex Defense
and FishEye Farms
EVENT GALLERY
Children’s Health Day
On June 16th we hosted more than 200 CHM patients
and families at Comerica Park for Children’s Health
Day. Funds generated from this event went towards
programs focused on keeping kids safe this summer.
Thank you to everyone who joined us!
How We Make a Difference
In the first round of the 2015 grant application cycle the Foundation
Grants & Compliance committee reviewed 84 applications and
approved 78 grants totaling $3.33 Million. These grants have been
awarded to various community non-profit organizations, Children’s
Hospital of Michigan, Wayne State University and University
Pediatricians. We are committed to communicating our grant
making strategies and are pleased to share with you a summary of
the grants approved by the Foundation.
GRANT MAKING SUMMARY
BY AREA:
COMMUNITY BENEFIT$1,380,000
EDUCATION$470,000
PEDIATRIC RESEARCH$1,480,000
TOTAL FUNDS
APPROVED*
$3.33 MILLION
GRANTS RECEIVED:
AWARDED
DENIED
WITHDRAWN PENDING
93%
4%
2%
1%
41% Community Benefit
14% Education
*Excluding
Endowed Chairs
and Professorships.
Visit our website chmfoundation.org to learn more.
45% Pediatric
Research
11
Children’s Hospital of Michigan Foundation
3901 Beaubien St., Mailbox #257
Detroit, MI 48201-9802
Nonprofit Org.
U.S. Postage
PAID
Detroit, MI
Permit No. 964
We’re seeing green!
We are excited to announce that in 2015, the About Children magazine can now be easily found online to read
and share with your family and friends. This new green initiative will allow us to allocate more dollars to other
areas so we can better serve children!
If you moved and/or we do not have an email address for you, please let us know by
contacting Clara Macek at 313.993.8815 or staff@chmfoundation.org to update your information.
Upcoming Events
Mark your calendars and grab your tickets before they sell out!
Wine, Women & Shoes
Halloween is
right around
the corner!
Head to your local Spirit
Halloween store and
support the Foundation.
Sept. 24, 2015
6:00 pm at the Dearborn Inn
American Girl Tea &
Fashion Show
Oct. 24 - Oct. 25, 2015
11:00 am - 1:00 pm
The Dearborn Inn
Festival of Trees 2015
Preview Gala - Nov. 22, 2015
Event - Nov. 23 - Nov. 29, 2015
Ford Community & Performing Arts
Center (FCPAC in Dearborn)
For complete event information visit
chmfoundationevents.org
For information contact:
Children’s Hospital of Michigan Foundation
3901 Beaubien Street, Box 257
Detroit, MI 48201
staff@chmfoundation.org
313.964.6994
chmfoundation.org
/chmfoundation