Children's View - Fall 2014 : Defeating Cancer

Defeating Cancer New Therapies Build Hope

also inside

Breathing Easier with Asthma

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the view from here

OFFICERS

BOARD OF TRUSTEES

Mortimer J. Buckley Chairman

N. Scott Adzick, M.D. • Steven M. Altschuler, M.D. • Clark Hooper Baruch • Madeline Bell • A. Lorris Betz, M.D., Ph.D. • Aminta Hawkins Breaux, Ph.D. • Mortimer J. Buckley • Reid S. Buerger • Dominic J. Caruso • Tristram C. Colket, Jr. • Arthur Dantchik • Mark Denneen • Mark Fishman • Lynne L. Garbose, Esq. • Shirley Hill • David P. Holveck • Anthony A. Latini • Lissa Biesecker Longacre • Sharad Mansukani • James L. McCabe • Akiko M. Miyashita • Maritza G. Montiel • Asuka Nakahara • Jeffrey E. Perelman • R. Anderson Pew • Gerald D. Quill • Daniel T. Roble • David B. Rubenstein • Anne Faulkner Schoemaker • Salem D. Shuchman • Kornelis Smit • Joseph St. Geme III, M.D. • Binney Wietlisbach • Nancy Wolfson • Dirk E. Ziff

Mark Fishman Vice Chairman Tristram C. Colket, Jr., R. Anderson Pew Honorary Vice Chairmen Steven M. Altschuler, M.D. Chief Executive Officer

At CHOP, we often say that one of our goals is giving “the gift of childhood.”

I think about that as the little things: The fun of building sandcastles on the beach, playing Little League, going out for ice cream, gearing up for a new school year. The joys that healthy kids take for granted.

Unfortunately, illness can rob our patients of some of those simple childhood pleasures, trading them in for hospital stays and rest. Illness forces many kids to find a level of bravery and strength beyond their years.

What struck me about this issue of Children’s View, featuring our Cancer Center as a cover story, is that despite

Clark Hooper Baruch Secretary Anthony A. Latini Treasurer

EX-OFFICIO

Thomas J. Todorow Assistant Treasurer

Paula Agosto, M.S.N., R.N. • Tami Benton, M.D. • Robert Doms, M.D., Ph.D. • William J. Greeley, M.D., M.B.A. • Diego Jaramillo, M.D., M.P.H. • Michael Levine, M.D.

Jeffrey D. Kahn, Esq. General Counsel & Assistant Secretary

EMERITUS

Margaret M. Jones Assistant Secretary

Leonard Abramson • Stephen B. Burke • Ruth M. Colket • Peter C. Morse • George Reath Jr. • Stuart T. Saunders Jr., Esq. • Richard D. Wood Jr.

THE CHILDREN’S HOSPITAL OF PHILADELPHIA FOUNDATION BOARD OF OVERSEERS (2014-15)

Lynne L. Garbose, Esq., Chair • Mark Fishman, Co-Vice Chair • David Oberkircher, Co-Vice Chair • George E. Aitken-Davies • Steven M. Altschuler, M.D. • Mortimer J. Buckley • Reid S. Buerger • David L. Colman • Carolyn Cullen • Mark Denneen • Jeffrey A. Fine, Psy.D. • Katy Friedland • Jami Friedman • Claire K. Hardon • Shirley Hill • Marjorie Honickman • M. Brad Ingerman, Esq. • Darlene K. Logan • Jonathan Lubert • Nancy Minnick • Rich Muth • Tamar Olitsky • Jeffrey E. Perelman • Elizabeth Proctor • David Rosenberg • Shane Sanders • Tim Scheve • Richard Seidel • Larry Sorsby • Michael Stolper • Nancy A. Wolfson • Steve Wolfson

their challenges — whether it’s cancer (Page 8), a neuromuscular condition called Friedreich’s ataxia (Page 16 ) or a severe peanut allergy (Page 18) — the children featured are normal kids. They play instruments and sports, excel in school, hang

Children’s Children’s View is produced by The Children’s Hospital of Philadelphia Foundation.

out with their friends and have diverse hobbies. Their illnesses pose obstacles, to be sure, but none holds them back from

EXECUTIVE VP & CHIEF DEVELOPMENT OFFICER

enjoying childhood.

Stuart Sullivan

And that’s due in large part to their CHOP teams, who have made sure that those kids are the healthiest they can possibly be, so that they can forget about illness and create arts and crafts, or go pumpkin picking. Many of you reading this have helped make that possible, by donating to the research that

WRITERS

Mark Turbiville

Louis Bell, M.D. Judy Hill Amy Korman Joy Manning Christine McLaughlin Eugene Myers

EDITORS

PHOTOGRAPHY

ASSISTANT VP, COMMUNICATIONS & DONOR RELATIONS

Sarah Jordan Julie Sloane

Ed Cunicelli Kevin Monko DESIGN

Kathy Smith

has made progress in treating and curing their diseases. Thank

ILLUSTRATION

you for all you do to help us give the gift of childhood.

PRODUCTION

Terry Cunicelli

COMMENTS AND INQUIRIES SHOULD BE ADDRESSED TO:

The Children’s Hospital of Philadelphia Foundation 34th Street and Civic Center Boulevard Philadelphia, PA 19104-4399 givehope@email.chop.edu For information about making a contribution to support CHOP, call 267-426-6500 or visit GiftofChildhood.org.

PRINTED BY

LLC

Nicole Keane

Steven M. Altschuler, M.D. Chief Executive Officer

Founded in 1855, The Children’s Hospital of Philadelphia is the birthplace of pediatric medicine in America. Throughout its history, a passionate spirit of innovation has driven this renowned institution to pursue scientific discovery, establish the highest standards of patient care, train future leaders in pediatrics, and advocate for children’s health. A haven of hope for children and families worldwide, CHOP is a nonprofit charitable organization that relies on the generous support of its donors to continue to set the global standard for pediatric care.

The Children’s Hospital of Philadelphia, Hope lives here and the logo are registered marks of The Children’s Hospital of Philadelphia.

Keep the connection. © 2014 The Children’s Hospital of Philadelphia, All Rights Reserved. 9224

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Children’s

cover story

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Defeating Cancer

The research and treatment at CHOP’s Cancer Center gives hope to thousands of families.

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CHOP’s global reach helps doctors in Botswana save lives.

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Wawa goes door to door to bring cheer — and beverages! — to patient families.

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Huggable Cellie supports cancer patients through their treatments.

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A quiz about vaccines, an innovative program to prevent bullying and more

A rare neuromuscular condition called Friedreich’s ataxia won’t stop Grace, 12, from realizing her dreams.

An experimental skin patch is helping kids with peanut allergies.

A season of fabulous fundraising events

Today@CHOP

Amazing Grace

Navigating a Nutty World

Volunteers in Philanthropy

On the cover: Gracie West, 10, is fighting neuroblastoma with her big spirit ... and 71,000 Instagram followers!

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today @CHOP

Basic Training

It’s a sad fact that millions of children in the developing world die from diseases that are easily preventable. But a team at CHOP has been working thousands of miles from Philadelphia in an effort to change that.

Medical personnel in low- and middleincome countries frequently lack the basic skills and medical knowledge to recognize and stabilize diseases that would be easily treated in the United States. Globally, 6.6 million children under age 5 will die each year, 4 million of them from pneumonia or diarrhea alone.

CHOP’s Global Pediatric Critical Care Program is on a mission to change those statistics by using an innovative education program called Saving Children’s Lives.

Partnering with the Ministry of Health in Botswana, the University of Botswana and the

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ABOVE: Recently certified himself, Segolame Kaelo instructs healthcare workers at Scottish Livingstone Hospital in Molepolole, Botswana.

BELOW: CHOP’s project coordinator Jessica Leffelman with local coordinator Boitshepho Kebaitse

American Heart Association, CHOP’s team is addressing the problem that many healthcare providers don’t know how to identify a child in respiratory distress or shock. “It’s a big thing that we’ve recognized this gap in their knowledge,” says Peter Meaney, M.D., M.P.H., director of the program. By teaching basic skills to healthcare workers — and teaching those workers how to instruct and teach more workers — CHOP’s program has created an everexpanding circle of essential lifesaving skills.

“Without training, healthcare workers often give children the wrong type of antibiotic or fluid, or the wrong amount, and the illness gets worse,” explains Meaney. “So a patient who came in for a sick visit becomes severely ill.” By the time the child’s illness is finally recognized, he says, often it has progressed too far and the child dies needlessly. And unfortunately, the problem is exacerbated by long wait times, as a single doctor can serve an entire population spanning dozens of clinics. Getting the diagnosis right the first time is essential.

With CHOP’s Saving Children’s Lives program, supported by Ronald McDonald House Charities, the American Heart Association and B-Line Medical Charitable Fund, local healthcare workers are being trained to assess and initiate stabilizing treatment to children under 5 years of age. This new approach by

CHOP — not simply to provide short-term help from Western clinicians, but rather to train local educators — strengthens the health system in a way that will continue long after the CHOP doctors and nurses have returned to Philadelphia. Simple diseases no longer have to be catastrophic.

This initiative is just one example of numerous programs supported by CHOP’s Global Health Center, designed to extend CHOP’s lifesaving expertise to children around the world.

After a successful pilot program at its flagship hospital in May 2013, the Ministry of Health requested that CHOP focus training in Botswana’s Kweneng District. “Through this partnership, we have trained 187 people and have a local instructor core of 10. But even more exciting,” says Meaney, “is the passion in the way the Botswana instructors and providers participate in and improve on the training.”

This program has had an immediate and dramatic impact on the lives of the people in the Kweneng District and has the potential to be used throughout Botswana and the world.

“Our duty is to empower and inspire,” says Meaney. “This program’s underpinning is about increasing human capacity through knowledge. We are making a huge difference with effective training.” — SARAH JORDAN

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Protect & Defend

Vaccinations are now such a routine part of childhood, we often forget just how devastating diseases like polio, whooping cough and measles once were, and parents sometimes wonder if vaccines are still necessary. CHOP’s Vaccine Education Center (VEC) provides all the latest information on the science, safety and importance of vaccines to parents and healthcare professionals. The VEC has also created “Vaccines on the Go: What You Should Know,” an award-winning mobile app that helps distinguish vaccine myths from facts. Find out more and download it for free at www.chop.edu/vaccine. Meanwhile, take our quiz and see how much you know about vaccines.

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The varicella vaccine prevents chickenpox. How many spots will someone with chickenpox usually get?

A. 10 to 50 B. 100 to 200 C. 300 to 500 D. 500 to 1,000 Before a rotavirus vaccine became available, one of which was developed at CHOP, how many children were infected with rotavirus in the U.S. each year?

A. 55,000 B. 500,000 C. 1.3 million D. 2.7 million

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Human papillomavirus (HPV) can cause a variety of cancers. Which of the following is almost always caused by HPV? A. Liver cancer B. Cervical cancer C. Skin cancer D. Lymphoma Seasonal flu epidemics occur every year. The Centers for Disease Control and Prevention recommend flu shots for most Americans starting at what age?

A. 2 weeks B. 6 months C. 18 months D. 6 years

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Shingles is caused by the same virus that causes chickenpox. The shingles vaccine is recommended for whom?

A. Children younger than 10 B. Adults age 20 to 30 C. Adults age 60 and older D. Adults older than 85

getting any vaccine, how long 6 After does it take for the body’s immune system to learn to recognize and protect against a disease?

A. Two hours B. Three days C. 7 to 10 days D. It happens immediately

Answer key: 1) C, 2) D, 3) B, 4) B, 5) C, 6) C

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today@CHOP

kids in the hall We walked the halls of CHOP and asked patients the same question:

If you could be invisible for a day, what would you do?

“I would go to the toy store and take some Littlest Pet Shop toys.”

“I would sneak up on everyone, scare them and laugh.”

Riley 6, Cardiology

Leilani, 5, Endocrinology

“I’d do the same thing I would do every day, only this time I could hear what people say when I’m not around.”

Nazir, 15, Hematology

“I’d spy on my sister and tickle her!”

Riley, 8, Endocrinology

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“Go in the ocean because it’s nice and cool.

I’d swim underwater.”

Olivia, 6, Oncology

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SPOTLIGHT ON:

The Wawa Hospitality Cart

The Wawa Hospitality Cart for Families is a welcome sight for parents at CHOP, whether they’re desperate for their morning coffee or getting a kind word when they need it most. Run entirely by CHOP volunteers, including many Hospital employees and Wawa staff, the cart rolls through inpatient units several mornings each week, offering free coffee, tea, hot chocolate, juice and bottled water — all generously donated by Wawa Inc. This morning, a mother named Joanne is enthusiastic when the Wawa Cart visits her son Noah’s room on 9 South. “You’re bringing coffee to the rooms? That’s so fabulous,” she says. Joanne has hardly left Noah’s bedside in three days, worried something might happen while she’s away. “Thank you.

This is such a great idea.”

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That great idea originated with Richard D. Wood Jr., Chairman of Wawa Inc. and an Emeritus Trustee of CHOP. He and Wawa store managers in the Philadelphia region introduced the cart in 1989 to simplify the lives of families staying at the Hospital, who are often tired and feeling stressed while coping with their child’s illness or injury.

The Wawa Cart is just one of the many ways that Wawa makes an impact at CHOP. In the past three decades, the company has donated more than $3 million to Child Life programs — funds raised in Wawa stores through Children’s Miracle Network. Wawa also has established an endowment for the International Adoption Health Program, granted funds to support kids and teens with HIV, and donated heavy cream to families in the

high-fat Ketogenic Diet Program.

The Wawa Cart also provides CHOP staff with the opportunity to connect more directly with patient families, and with one another.

“It’s a bonding experience for the department,” says Amanda Evans, who is volunteering today with Jonathan Hood and Elizabeth Robinson, her colleagues from Government Affairs, Community Relations and Advocacy.

For families at CHOP, the Wawa Cart is often a comforting reminder of home. “We came from New Jersey and didn’t have time to stop for something to drink. Having the coffee cart here was awesome,” says Lisa, waiting outside the Cancer Center’s Alex Scott Day Hospital with her 17-year-old son, Matthew. “Kids from his high school think Wawa is the greatest thing since sliced bread.”

— EUGENE MYERS

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today@CHOP my CHOP hero

Connelly Center Staff “I cannot say enough about the Connelly Resource Center for Families, its staff and the programs of the center. We were inpatient for six-plus months with Brandon and thanks to the Connelly Center, we were able to conduct our business from the Hospital. I was given stamps, envelopes and paper; had items faxed and scanned; and used the computers quite frequently. Our family enjoyed the coffee breaks and the drinks provided by Wawa. We did our laundry there. We took naps there. My children checked out books and movies and games. They loved to go to the Connelly Center.

Please keep these valuable programs going for future families.

The support the Connelly Center gave our family during this very difficult time was priceless. One can’t imagine how helpful that is to a parent who is spending such a long time at a hospital with their child. Your staff are angels. Many thanks to you, Laverne, Prentice, Ray and Heather [right]. Keep up the good work.

Thank you, thank you, thank you.” — Tina, aunt of Brandon, 9

To honor a CHOP employee who has gone above and beyond for your family, go to giftofchildhood.org/myhero.

What are your options when your kid has a fever at bedtime or needs a few stitches after a weekend fall? You can spend hours in the ER, where you’ll face a hefty copay, or wait until your primary care doctor’s office opens. Now, families in the western suburbs have a better option: The Children’s Hospital of Philadelphia has opened a pediatric urgent care center in King of Prussia, Pa., serving children and adolescents.

Located within CHOP’s existing Care Network location in King of Prussia, the Urgent Care Center is open “after hours” — weekdays 4 to 11 p.m. and weekends 10 a.m. to 10 p.m.

— when physician offices typically are not. Don’t expect to get your child’s school physical here or other wellness care, but it’s the right place when you need to see a doctor with same-day issues.

“Our center brings two key elements to the community. First, we are collaborative with the patient’s primary care doctor. Second, we

An architect’s rendering of the new King of Prussia Specialty Care Center, opening in 2015 bring a unique set of pediatric-specific clinical expertise,” explains Michael Maraventano, M.D., Medical Director of the CHOP Pediatric Urgent Care Center. “Not only do our pediatricians have specialized training in the care of urgent illness and minor injuries, but our nursing and technical staff are specialized, too.” In addition to the staff, the center is supported by pediatric specialists and the expertise of CHOP, such as pediatric radiologists, to augment the diagnostic and treatment process.

CHOP is building a new state-of-the-art clinical facility in King of Prussia (pictured above) which will open next year. It will be home to urgent care as well as CHOP’s Specialty Care Center, which offers a range of diagnostic testing, treatment and rehab services.

Not only will the new Urgent Care Center in King of Prussia provide access to pediatric specialists at later hours, but it will also help preserve emergency rooms for true emergencies.

And that’s good for everyone. — JOY MANNING

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Photo courtesy of NewsWorks

No More Bullies!

Stephen Leff, Ph.D., pilots the Partner for Prevention initiative at Philadelphia-area schools to stop bullying and teach better social and friendship skills.

Bullying. Victim. Aggression. These are terms that kids hear a lot these days. A recent study in Pediatrics shows that more than 90,000 kids visit emergency departments each year for “intentional” injuries despite a growing awareness of bullying. This number doesn’t even include emotional injuries and pain.

“We know anybody can be a bully or a victim depending on circumstances,” says Stephen Leff, Ph.D., a CHOP psychologist who is co-director of the Hospital’s new Violence Prevention Initiative.

Leff and his colleague, psychologist and violence prevention program manager Brooke Paskewich, Psy.D. — along with a team of psychologists and social workers — are changing the way children think and, therefore, how they act. It starts with improving social and friendship skills, then entrenching positive behavior with a partnership among kids, teachers and parents.

The Partner for Prevention (P4P) initiative is multipronged and consists of the PRAISE (Preventing Relational Aggression in Schools Everyday) and PLAYS (Playground, Lunchroom and Youth Success) programs, as well as a program for teacher support and coaching and parent outreach workshops.

The programs take place in four Philadelphia public schools and focus on children in third, fourth and fifth grades. The kids meet twice a week over 10 weeks. The PRAISE program — with support from Pew Charitable Trusts — teaches kids how to recognize when they’re

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starting to get angry (what their face and body feel like) as well as some practical cool-down strategies using visual imagery. “We’re teaching them how to slow themselves down, to become good detectives about why something happened and to help them think through their choices in each situation,” says Leff. “We use cartooning, video illustrations and role-playing to help illustrate those points in a fun and engaging manner.”

PRAISE teaches perspective-taking skills to increase empathy for others. Kids are also instructed how to be a positive bystander and shut down bullying behavior before it can begin.

Lunchrooms and playgrounds are frequently arenas for bullying.

With the PLAYS program, communication skills are taught to kids, and recess supervisors learn similar skills for these two hot zones.

Supervisors learn how to engage the kids, as well as how to monitor them, enforcing clear-cut playground behavior rules and redirecting kids into positive play. “If students are kept busy during recess time, they’re much more likely to get along with others and not become involved in fighting,” says Leff.

What sets the P4P program apart is how it empowers children.

Conventional bullying prevention is turned upside down through the program’s positive, uplifting approach. “Instead of saying to kids, ‘We’re helping you to stop bullying,’ we tell them, ‘We’re helping you with friendship problems,’” says Paskewich. “The kids — CHRISTINE MCLAUGHLIN really enjoy it.”

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ask Dr. Bell Louis Bell, M.D., chief of the Division of General Pediatrics at CHOP, shares the latest in medical thinking on an important topic: asthma.

BY LOUIS BELL, M.D.

Breathing Easier with Asthma Along with changing leaves and a new school year, for some families fall coincides with more trips to the hospital. Chilly weather and bouts of the common cold can make it harder for kids with asthma to breathe. How can you tell if your child has asthma?

What can you do to keep him or her out of the emergency room?

Tyra Bryant-Stephens, M.D., founder and director of the Community Asthma Prevention Program at CHOP, offers some general guidelines for preventing and treating asthma. Asthma is complex and individual to each child, and it is the most common chronic childhood disease — affecting about 7 million kids in the U.S. — and one of the most common reasons for emergency room visits and hospitalization.

The next step is to determine what might be the cause of the episodes, what’s known as the trigger, which can be anything from environmental factors in the home such as dust mites and cigarette smoke to allergies and respiratory tract infections. If your child’s colds seem to last much longer than seven to 10 days with a lot of coughing, which is worse at night, he or she may have asthma.

An asthma trigger causes inflammation and swelling of the airways, narrowing them and resulting in wheezing and coughing. One important way to manage asthma is to remove triggers; something as simple as cleaning and using pillow and mattress covers can minimize your child’s exposure to indoor triggers, particularly dust or cockroaches — a major allergen in cities. Children sensitive to cigarette smoke still can be affected if an adult smokes in another room with the window open.

In addition to avoiding triggers, if a child wheezes more than once or twice a year, he or she may also need daily preventive medication.

The most effective are inhaled corticosteroids from a handheld inhaler — commonly called a puffer — attached to a small plastic tube called a spacer that delivers the medicine deeper into the lungs. Many parents worry about their child taking steroids for asthma, but the medication

Asthma is typically diagnosed with wheezing and coughing episodes.

Asthma typically is diagnosed with classic wheezing episodes and/or coughing episodes. Infants and children younger than 3 years old may experience four or more wheezing episodes during a cold or respiratory infection, and children between the ages of 3 and 6 may complain of nighttime coughing — perhaps your first clue that your child has asthma. Children older than 6 can be diagnosed with a breathing test.

For more of Dr. Bell’s columns, please visit childrensview.org.

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is different from the steroids that athletes take to build muscle, with no significant side effects or risk of addiction.

Because asthma is always present, even when there are no visible symptoms, it’s vital to take the controller medicine once or twice a day.

Forgetting could lead to breathing trouble, requiring a dose of quick-relief “rescue” medicine and potentially a visit to the emergency room. Parents should learn to notice the signs of labored breathing to determine if their child’s asthma can be managed at home or requires a doctor. Parents should also continue monitoring their children even when they’re older, as teenagers are notorious for skipping their medication.

Though parents may be concerned about their child being “sick” for the rest of his or her life, if a child’s asthma is managed, he or she can lead an active, healthy life; in fact, there are a number of Olympic athletes who have asthma or had it during childhood. The goal is not to have children do less, but to have better control so that they can do everything they want to.

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cover story

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Sophia, 5 Fall 2014

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Defeating Cancer When a loved one is diagnosed with cancer, fear and stress

are constant companions. When that loved one is a child, the news and its sheer unexpectedness is particularly devastating.

Childhood should not include chemotherapy.

Fighting cancer becomes a whole new reality for these immensely brave children and their families. And when a child’s life hangs in the balance, only the best care will do.

That’s what brings so many families from across the country and around the world to CHOP’s Cancer Center.

Among the largest and best programs in the nation, the Cancer Center sees more than 500 new patients every year and follows more than 4,000 others. Not only are its clinicians experts in most cutting-edge treatments to fight cancer, but they also push the boundaries of knowledge, finding the cures for some of the most difficult cancers. CHOP is a leader in the Children’s Oncology Group, a national consortium of pediatric cancer research, and runs some of the most innovative studies in the nation on pediatric cancer.

In the coming pages, you’ll read the personal stories of some of CHOP’s patients. You’ll also discover how CHOP leads the way with its medical breakthroughs such as immunotherapy research and raises awareness of pediatric cancer with the annual Four Seasons Parkway Run & Walk, to be held this year on Sept. 28.

Today, survival rates for pediatric cancer are dramatically improved from decades past. But we can do better, and we must. CHOP is engaged in that fight every day — to save lives, give survivors an excellent quality of life and ensure that future generations will win their personal battles with cancer.

— JULIE SLOANE

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cover story

Nick Wilkins, 15

In the Nick of Time An extraordinary clinical trial is already saving kids, including Nick Wilkins, whose treatment options had run out until he came to CHOP.

BY AMY KORMAN

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NICK WILKINS, 15, HAS BEEN ON A ROLLER-COASTER ride — literally and metaphorically. Nick, who has battled leukemia for most of his life and is part of a clinical trial at CHOP, calls himself “kind of an adrenaline junkie.” He was just weeks into his treatment last summer when he asked his CHOP oncologist, Stephan Grupp, M.D., Ph.D., “Can I go to an amusement park and go on a roller-coaster that goes 128 miles an hour?”

“Dr. Grupp’s face was priceless when Nick asked that,” recalls Nick’s mother, Lisa Wilkins. And once Dr. Grupp recovered from his surprise, the answer was yes. There was no medical reason not to go.

Thanks to the efforts of Grupp and his CHOP colleague Susan Rheingold, M.D., Nick is finishing up 10th grade in his hometown of Ashburn, Va., and practicing baseball every day, since he’s planning to join the high school team this fall. “Science is my favorite subject,” he says on a Thursday afternoon, when he’s preparing to study for final exams and hoping to lure his little sister Ashley outside for a quick batting practice before dinner.

With his dark hair, engaging smile and cool glasses, Nick fits right in with other style-savvy, sports-loving teens, but his journey to 10th grade has proven that Nick and his family are made of stronger stuff than most: Nick was 4 when routine blood tests on a well visit to his pediatrician showed that he had leukemia. The pediatrician reran the tests for three days, puzzled because Nick was so energetic and lively.

ABOVE: Oncologists Stephan Grupp, M.D., Ph.D., (left) and John Maris, M.D., are employing immunotherapy to wipe out cancer.

“A lot of kids would have been sick, run down, pale,” recalls Lisa Wilkins. “But he didn’t show any signs of that.

The pediatrician called to ask, ‘Is he moving?’ I told him Nick was outside playing with his sister, having fun. Most kids would have been flat on their back.”

Unfortunately, the tests proved that Nick’s leukemia diagnosis was correct, and he began his treatment odyssey with two and a half years of chemotherapy. Just three months shy of reaching his five-year anniversary of being cancer-free, Nick relapsed. Nick’s next course of treatment was to have a bone marrow transplant. Tests showed his two sisters were both perfect matches, and his older sister Brittany became his donor in January 2010.

But three years later, doctors at Duke University told Lisa and her husband, John, that Nick had relapsed again.

After one month of chemotherapy to prepare for another bone marrow transplant, Nick’s cancer cells were now resistant to chemotherapy. They were out of options to save his life — until their doctor informed them about immunotherapy trials being conducted at CHOP, under the direction of Grupp. The CHOP trial, conducted in collaboration with the University of Pennsylvania, has treated 30 patients and has achieved an extraordinary 90 percent complete remission rate.

These results have led to a Phase II trial, supported by the drug company Novartis, intended to see if the treatment will work in a larger group of patients, including those at other hospitals. This trial is being facilitated by a grant from Stand Up to Cancer (SU2C) and led by John Maris, M.D., at CHOP. SU2C has supported the formation of an immunotherapy consortium of elite pediatric hospitals across North America.

Lisa Wilkins did thorough research before Nick’s initial appointment at CHOP in April 2013. “There wasn’t a lot of information out there on the T-cell study, but when I met Dr. Grupp, I knew this was what we needed to do,” she says calmly. Just four days after meeting with Grupp, some of Nick’s T cells were removed. Then the cells were genetically modified to attack his cancer cells before being reintroduced to Nick’s body.

“We went home and waited about six weeks to see if the cells were growing,” Lisa recalls. “And then we got the call that they had.” After a round of chemotherapy, he had a second infusion with his reprogrammed cells.

One month later, he was cancer-free. Each month since, he has traveled three hours to CHOP for a checkup, and the results have been dramatically positive. He has had no cancer treatment since.

Nick’s future is bright, including this summer’s trip to Kings Dominion in Virginia for another roller-coaster ride.

And he and his family credit CHOP’s efforts for turning around his young life. “It’s really cool to be a part of something that could be the cure for cancer,” says Nick.

To learn more about the immunotherapy clinical trials, please visit www.chop.edu/tcelltherapy.

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cover story cover story

One Tough Cookie Cancer patient Gracie West inspires in her role as a Four Seasons Parkway Run & Walk ambassador.

BY JOY MANNING

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Each year, a few special patients serve as ambassadors at the Four Seasons Parkway Run & Walk, an annual event that has raised more than $6 million for pediatric cancer research and survivorship programs.

One of this year’s ambassadors, Gracie West, 10, is using social media to raise awareness for the event.

Read more about her below, and sign up for the Four Seasons Parkway Run & Walk at parkwayrun.org.

SUN SEPT.28

Benefits Cancer Research and Survivorship at

The Children’s Hospital of Philadelphia

GRACIE WEST IS AN INCREDIBLY STRONG YOUNG LADY. How strong? Her nickname is Cookie, says her mom, Sharon, as in “one tough cookie.” She’s also a very popular Cookie: The Freehold, N.J., fifth-grader has 71,000-plus followers on Instagram, where you can find her under the username cookiescrumblers.

Before her diagnosis of neuroblastoma, a rare cancer of the nerve cells, last November, Gracie showed off her uncommon grit on the soccer field and in the swimming pool. Sharon says that in the last six months, she has shown a new level of toughness that surprises even her doctors.

“She was being treated with a notoriously hard chemo drug, and the doctors braced us that it would be rough. But instead of complaining, she was showing the doctors magic tricks and trying to keep our spirits up,” says Sharon. She has also taken to giving impromptu ukulele concerts, an instrument she first discovered in CHOP’s Music Therapy program.

Her charming personality has drawn many supporters to her cause — even some celebrities. After meeting YouTube sensation Bethany Mota at an event in New York City, the two connected online and Mota has helped attract attention to Gracie and, more important, her foundation, Cookie’s Crumblers. Right now the foundation is raising money to help pay for Gracie’s treatments, but in the future it will help other children battling cancer as well.

“Gracie wants to pay it forward — helping others is so important to her,” says Sharon. Since its inception five months ago, Cookie’s Crumblers has raised more than $45,000.

As the race approaches, Gracie plans to bring that fundraising prowess to her role as ambassador. Both Gracie and her mother are thrilled that 100 percent of the funds raised through the Four Seasons Parkway Run & Walk will directly benefit Gracie and other children like her. Last year’s event raised an impressive $1 million and drew more than 10,000 attendees.

If Gracie has anything to do with it, this year’s numbers will smash all previous records. With her following, it’s possible. If she is well enough, Gracie will participate in this year’s walk, no doubt cheering everyone along as she goes.

But Gracie’s ability to inspire goes way beyond race day. She has gotten good at lifting both the mood of everyone around her and her own spirits.

“If I ever start to feel bad,” she says, “I look at myself in the mirror and say, ‘I’m strong. I’m brave. I’m a tough cookie.’”

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Hello, Dolly!

CHOP patient Max Veeck used Cellie’s helpful suggestion cards to help him tolerate his oral chemo doses.

Cuddly Cellie provides comfort to kids living with cancer.

BY SARAH JORDAN

WHEN MAX VEECK WAS 3 YEARS OLD AND COMBATING a rare Desmoid tumor, taking 16 milliliters of daily oral chemo was a hard and unrelenting task. It can be difficult to convince a preschooler of the value of drinking yucky medicine day after day, month after month. It was certainly becoming an escalating challenge for Max’s mom, Kathy. Enter Cellie.

Cellie is part of pediatric psychologist and behavioral researcher Meghan Marsac’s cancer coping kit, co-invented with artist Anne Vinsel. Cellie was sparked by Marsac’s observations working with oncology patients at CHOP during her fellowship. She identified a need for this therapeutic tool to teach parents coping techniques that most wouldn’t normally need to know. Cellie keeps a stack of cancer coping information cards in its mouth with practical tips and techniques for everyday coping strategies.

“Parents are good at parenting in a natural context. However, when a child is diagnosed with cancer, parents face unique, unexpected challenges,” explains Marsac. “Those parents have to figure out how to support their children through treatment.”

How do you make kids comfortable through an endless number of needle sticks? What are cognitive distraction techniques for coping with nausea? How do you rally the spirit of a child who’s losing hair because of chemo?

Kathy Veeck testifies to the success of Cellie. “Max was taking flavored oral chemo and it was a challenge,” she recalls. “He was rebelling against it, so we got the doll. There was a card that told us to ‘chase the medicine with his favorite juice.’ It really helped. That and the one about ‘belly breathing,’ to relax.” Kathy remembers he would bring the cards with him to bed every night and insist that she read them all to him. Max finished chemotherapy in October 2013 and is doing well, with no tumor growth.

To learn more about Cellie, or to order a Cellie kit, visit celliecopingkit.org.

CHOP gives every cancer patient a Cellie coping kit for free.

The kit keeps both family and medical staff working as a team, using the same techniques. Marsac explains that she wanted to support families at home as well as in the Hospital. So if a child comes home from school and is losing her hair, the parent has a resource in that exact moment of stress. The Cellie kit provides immediate assistance to the patient and empowers the family to solve problems.

CHOP began distributing the coping kit in February 2013, with charitable support from the Coach Wags Memorial Foundation. Cellie kits can be purchased by other hospitals or individuals for patients outside CHOP at celliecopingkit.org. A Spanish translation is under way. We all need comforting in times of stress, but Cellie knows just what to tell kids who are coping with the unique trials of cancer.

A Gift from Taylor Swift Last summer, singer Taylor Swift visited with oncology patients and followed up with a generous $50,000 donation to Children’s Hospital. Swift’s gift will go toward music therapy and an oncology program for teens. The singer spent several hours at Seacrest Studios, CHOP’s closed-circuit television station, which broadcasts exclusively in the Hospital. Swift is known for her support of cancerrelated charities with her song “Ronan,” which was written in memory of Ronan Thompson, a patient who came to CHOP for consultation and later died of neuroblastoma at the age of 4. She has donated all proceeds from the sale of that song to cancer charities. < Maddie, 13, and Taylor Swift

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Amazing Grace

SITTING ON A SOFA IN HER SUBURBAN PHILADELPHIA living room, wispy blond hair pulled back in a ponytail, braces crowding her ready smile, 12-year-old Grace Haupt looks like any happy-go-lucky sixth-grader.

But Grace’s preteen world, filled with friends and homework, field trips and family fun, differs from that of her peers in one important way: Grace has Friedreich’s ataxia, a progressive neuromuscular disease that causes loss of coordination in the arms and legs as well as muscle weakness and fatigue.

The condition, FA for short, is relatively rare — only about 5,000 people in the U.S. have it — and there is, as yet, no cure.

Children with FA frequently develop curvature of the spine and an enlarged heart.

This spring, with Penn Medicine, CHOP established the Friedreich’s Ataxia Center of Excellence — the first of its kind in the nation — dedicated to fostering FA research and clinical care and discovering and developing drugs to treat the disease.

The new Friedreich’s Ataxia Center of Excellence gives hope and education to Grace Haupt and patients just like her.

BY JUDY HILL

Grace Haupt, 12, diagnosed with Friedreich’s ataxia (FA) when she was in preschool, comes to the FA Center for Excellence for her care.

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The center was established with a $3.25 million gift from the Friedreich’s Ataxia Research Alliance (FARA), as well as support from the Hamilton and Finneran families. CHOP, FARA and Penn Medicine have long been at the forefront of FA study, collaborating on research and clinical trials to pinpoint the metabolic dysfunction at its root.

David Lynch, M.D., Ph.D., is co-director of the center and also directs CHOP’s Friedreich’s Ataxia Program. Deeply involved with FA research for 15 years, he remains hopeful for a cure: “What motivates me is the possibility of contributing to treatments and therapies to come and helping this group of sincere, intelligent individuals.”

Lynch has been Grace’s doctor since she first began showing symptoms in pre-K. Teachers had noticed her losing her balance and bumping into people, which led her parents, Holly Hedrick, M.D., the Louise Schnaufer Endowed Chair in Pediatric Surgery at CHOP, and Hans Haupt, M.D., a cardiothoracic surgeon with Penn Medicine, to embark on a year of wide-ranging tests until the diagnosis was confirmed in 2007.

Though Holly is a doctor herself, she remembers behaving like any anxious mom: “I would be Googling late at night to try and get more information, then I’d go into her room and watch her sleep.” Grace doesn’t dwell on her disease. Though she is often tired by the end of her school day, she loves learning and is a voracious reader with a keen scientific mind. Tinkering with electronics is her passion, and she has been known to ask for alligator clips and cables for Christmas. “I love playing around with circuit boards,” she says, “and I want to make my own inventions.” The family’s great provider of facts, Grace is often called on to help sister Lily, 11, and brother Henry, 10, with their schoolwork. “The good news,” says Grace, “is that my brain will always be healthy.”

An early riser, Grace likes to catch up on fiction before the beginning of the school day. Reading and writing inspire Grace. “She is able to lose herself in her books and stories,” says Grace’s mom.

“She once told me that she loved to write because she can do all the things in her stories that she is not able to do in real life.”

Since just walking across the room can be exhausting for Grace, she gets around at school in a motorized scooter and wears a back brace for her scoliosis. Regular physical therapy sessions help keep her strength up, and she also enjoys riding a recumbent bike, often taking trips to the local Starbucks with her mom. Every year in the fall, Grace and her family take part in Ride Ataxia, a bike ride happening Oct. 12 this year to raise money for FA research.

Grace visits CHOP many times per year for neurology, cardiology, orthopedics, physical and occupational therapy and to see Lynch. “We always say we go to Dr. Lynch for an injection of optimism,” says Holly. “He is our community’s champion and cheerleader and counselor and source of great hope. We know we are getting the best care, delivered in a way that makes us all really part of the team.”

With leadership and support from Holly, CHOP now puts on an annual FA symposium where families from all over the world — Ireland, California, Alaska, South Dakota — gather to learn about the latest research and treatments. The parents appreciate the information, while the children have fun playing together, knowing they are not alone in facing FA. For Holly it’s just one more reason she is thankful for CHOP. “No matter where we lived in the country or world,” she says, “I would come to CHOP for Grace’s care. No question.”

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NAVIGATING

A NUTTY WORLD

ABOVE: Megha Parikh, 11, hopes the peanut desensitization skin patch continues to decrease the severity of her reaction to peanut proteins.

OPPOSITE: It takes a family to avoid accidental peanut exposure. Megha gets help from sister Sonam (left), and mother Rashmi (right).

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Peanut allergies can be life-threatening, but CHOP researchers are hoping to save lives with an innovative skin patch.

BY SARAH JORDAN KIDS WITH NUT ALLERGIES GET USED TO CARRYING around EpiPens everywhere they go, toting BYO cupcakes to birthday parties, and obsessively reading ingredient labels on food — but they wish they didn’t have to.

It takes a lot of time and planning to stay healthy in a nutty world. And even with careful avoidance, food allergies — including those to other foods like milk, soy, eggs and wheat — are responsible for almost 100,000 emergency room visits and 150 to 200 deaths per year in the U.S. alone. Peanuts, out of all food allergies, most often cause the reactions that lead to fatal food anaphylaxis.

While many kids outgrow allergies in general, only about 20 percent of children with peanut allergies ever do.

That’s why 11-year-old Megha Parikh, of Basking Ridge, N.J., and her family were eager to participate in a peanut desensitization trial currently under way at CHOP and 23 other centers worldwide that is experimenting with the novel idea of a skin patch to induce peanut protein tolerance. This busy sixth-grader, whose life is filled with homework, art projects, playing the flute, taekwondo, parties and family trips, must always remain vigilant against the threat of her peanut allergies. Megha would rather be putting that energy and focus into something more fun.

Megha’s mom, Rashmi, feels that any improved peanut tolerance, no matter how small, will be worth it. “It would be such a relief to know that she won’t have a reaction right away,” says Rashmi, who has seen her daughter suffer accidental exposures that trigger hives, vomiting and lethargy. “Our family has embraced Megha’s allergies and it’s become a part of our lives, but it would be a huge relief to know that Megha’s reaction to peanuts will be less severe. Our main concern is her safety.”

At the beginning of the study, Megha could only handle the equivalent of 1/1,000th of a peanut without an allergy attack.

One year later, she can now handle the equivalent of one single

peanut. In the food allergy world, that’s an enormous leap.

The patch delivers peanut proteins on the upper layers of the child’s skin. The goal is to eventually change the child’s immune system and essentially eliminate the allergy — or at least lessen the reaction enough to provide some protection against accidental exposures, buying time to seek treatment.

The hope is that the patch can deliver the peanut protein with fewer side effects than occur with traditional oral desensitization, in which kids eat the peanut protein.

CHOP is a national leader in food desensitization studies and has active studies involving milk, egg and peanut allergies, many of which have shown great success in reducing or eliminating the allergies.

Much of this pioneering work would not be possible without the generous support of numerous families, including Gwen and David Keiser, Sharon and Harry Pollack, and Cynthia and Robert Savett.

Jonathan Spergel, M.D., Ph.D., section chief of CHOP’s Division of Allergy and co-director of the Center for Pediatric Eosinophilic Disorders, explains why parents are eager to participate: “Some parents want to find a cure, and by volunteering their child, they can move the process one step closer to getting a cure.”

If it works, he says, children in the study will reap the benefits as much as five years before the treatment is FDA-approved.

The goal of the patch is that even if Megha and her fellow participants never eat a peanut butter and jelly sandwich or plow through a pack of Reese’s Peanut Butter Cups, at least if they are accidently exposed to a peanut, they will be OK, or have enough time to get to a hospital. “This patch gives us hope, where there were no treatment options before,” says Megha’s CHOP doctor and principal investigator on the study, Terri Brown-Whitehorn, M.D. Megha’s reaction to joining the study? “Even if it doesn’t help me, but another kid after me, it will be worth it.”

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volunteers in philanthropy S IG NATU RE EVE NTS

58th Annual

DAISY DAY LUNCHEON & FASHION SHOW

LEFT (back row): CHOP CEO Steven Altschuler, M.D.; Lori Howell, M.S., R.N.; Honorary Chairs Jed and Mary Kelly; Zac Posen; N. Scott Adzick, M.D.; Daisy Day Committee Chair Nancy Wolfson; Mark Johnson, M.D. (front row): Chris and Addison Kelly.

RIGHT: Posen with Addison Kelly. OPPOSITE: Models wearing the Zac Posen Fall 2014 collection.

On May 8, the Daisy Day Luncheon and Fashion Show, the largest annual fundraising event for CHOP, was held at the Hyatt at The Bellevue in Philadelphia. Nancy A. Wolfson celebrated her 16th consecutive year as chair of Daisy Day. Its honorary chairs were Mary and Jed Kelly, parents of 7-year-old Addison, who received lifesaving surgery before birth to remove a tumor from her chest. Nancy and Richard Wolfson and Family were the event’s presenting sponsor; additional lead sponsors included the Leonard and Madlyn Abramson Family Foundation, Children’s Surgical Associates, and Joan and John Thalheimer.

The day featured keynote speeches from N. Scott

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Adzick, M.D., CHOP Surgeon-in-Chief and director of the Center for Fetal Diagnosis and Treatment (CFDT), and Mary Kelly. 6ABC anchor Alicia Vitarelli emceed the CHOP Fashion Show, and internationally renowned fashion designer Zac Posen presented his Fall 2014 collection, sponsored by Saks Fifth Avenue. Through tickets, donations, and silent and live auctions — and thanks to the tireless efforts of the Daisy Day Committee — this year’s event raised a record-breaking $1.7 million to benefit the CFDT, including the Addison’s Hope for Fetal Families Fund, which enables mothers who are carrying babies with known birth defects to travel to the center for care.

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volunteers in philanthropy S IG NATU RE EVE NTS

Volunteer Leadership Summit 2014 Daisy Day Luncheon Committee

Nancy Wolfson, Chair Madlyn Abramson Ashley Albrecht Kristyn Aldrich Ashley Baiocchi Allison Beato Marce Becker Cathy Black Marjorie Cottrell Traci Ernst Juliette Faughnan Judy Felgoise Ann Frankel Mali Gertel Beverly F. Goldberg Andrea Heffler Karen Horn Cherifa Howarth

Regina Klauder Cheryl Koons Marcy Kramp Lori Levin Kelley Maddox Nancy Minnick Carol Momjian Donna Obrecht Ellen Perlmutter Emily Reiner Joanne Schell Elizabeth Sherman Donna Slipakoff Debbie Stamm Linda Steinberg Stacey Jacovini Storm Diane Stulb

On April 5, more than 160 volunteers, trustees and CHOP leaders met at the 4th Annual Volunteer Leadership Summit at the Hyatt Regency Philadelphia at Penn’s Landing. The 2014 HOPE Award for Distinguished Volunteer Service went to Nancy Wood, in recognition of her nearly two decades of dedication to CHOP, primarily through the Auxiliary of The Children’s Hospital of Philadelphia and the Executive Council of Volunteer Organizations.

The Four Seasons Hotel Philadelphia received the 2014 Volunteer Organization of the Year Award for its longtime partnership with CHOP in producing the annual Parkway Run & Walk, the single largest fundraiser benefiting CHOP’s Cancer Center.

CHOP Golf Classic

On June 16, the annual CHOP Golf Classic was held at Seaview Golf Resort in Absecon, N.J. The golfers enjoyed a beautiful day on the links, and the event raised more than $200,000 for a variety of critical programs throughout the Hospital. The Lynn Saligman League hosted the tournament and Turner Construction returned as the lead sponsor.

The event’s honorary chairs were former Philadelphia Flyer Brian Boucher and Al Morganti, co-host of the “94WIP Morning Show.”

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Springfield Township High School 24-Hour Game-a-Thon Jan. 31, Springfield Township High School, Glenside, Pa. • Students in the Strategic Game Club organized a 24-hour game-a-thon to raise $2,200 for Child Life programs at CHOP.

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Cupid’s Cranium 5K and 1 Mile Walk Feb. 8, Pope John Paul II High School, Royersford, Pa. • More than 700 participants in this walk/run raised $20,000 to support brain tumor research at CHOP.

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The God Box, A Daughter’s Story March 9-11, Glenside, Pa. (Arcadia University Theater) and Philadelphia (Saint Joseph’s University Bluett Theater, Kimmel Center Innovation Studio) • This special engagement of author Mary Lou Quinlan’s “The God Box: A Daughter’s Story,” raised $10,789 for the Sister Alice Tribute Fund, which supports the Chaplaincy Program at CHOP.

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Heart Hero Thirty One Bingo Night March 16, Waynesboro Ambulance Squad, Waynesboro, Pa. • The bingo night raised $4,805 for the Single Ventricle Survivorship Program at CHOP.

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5th Charitea for CHOP March 22, Newtown Presbyterian Church, Newtown, Pa. • The annual tea party collected DVDs and books and raised $7,422 for Child Life programs at CHOP.

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Osprey-THON March 22, The Richard Stockton College of New Jersey, Galloway, N.J. • This year, students at Stockton College hosted their first Dance Marathon and raised $5,061 for the Social Work Emergency Fund.

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Costco/Newman’s Own Donation March 25, The Children’s Hospital of Philadelphia • Philadelphia-area Costco stores made a donation of more than $40,000 to Children’s Miracle Network at CHOP, from funds raised through Newman’s Own.

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McLane Chili Cook-off March 26, McLane New Jersey Warehouse, Carney’s Point, N.J. • Throughout the year, McLane does many small and large events to benefit Children’s Miracle Network at CHOP; in 2013, they raised $53,102. Below is their annual Chili Cook-off, with guest judge Miss Delaware!

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Julia Kivlin Memorial Volleyball Tournament April 4, Downingtown High School East, Downingtown, Pa. • Students from Downingtown East participated in a volleyball tournament to raise funds for brain tumor research at CHOP. Jewels for Julia also sold bracelets, helping the event raise a total of $7,750.

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Michael Detweiler Memorial Bowl-a-Thon April 5, Earl Bowl Lanes, Earlington, Pa. • The bowling event hosted by the Detweiler family filled all 34 lanes in two shifts and raised $17,000 for the Children’s Brain Tumor Tissue Consortium and Child Life.

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5th Annual Walk for Hope April 13, Veterans Park, Hamilton, N.J. • The 5K run/walk and 2K family walk organized by the IBD Family Research Council of CHOP featured an auction, giveaways, refreshments and entertainment. It raised a record-breaking $100,000 for the Center for Pediatric Inflammatory Bowel Disease.

Chelsea Scores for CHOP April 19, Red Bank Armory Ice Complex, Red Bank, N.J. • The 7th Annual Red Bank Catholic High School Alumni Hockey Game and after-party at Taste restaurant raised more than $3,056 for congenital diaphragmatic hernia research at CHOP. MEC 5K Walk & Run April 26, Russell Elliott Memorial Park, Feasterville, Pa. • The MEC Leukemia Survivorship Foundation and the Crooks family brought together more than 125 runners and walkers to raise $14,000 in support of the Buerger Center.

3rd Annual Make Every April Better 5K Walk and Fun Run April 26, Tyler State Park, Newtown, Pa. • The walk/ run and auction raised $7,375 for Hodgkin’s lymphoma research at CHOP.

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Swinging with CHOP April 26, Polish American Band Club House, Philadelphia • The Wiffle ball tournament featured 56 players and more than 100 attendees, who enjoyed an auction, food, drinks, face painting, a moon bounce, live music and more — raising more than $4,000 for the Center for Autism Research at CHOP.

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Luca’s Birthday Wish April/May, Landsale, Pa. • Friends and family of Luca Paciente helped grant his birthday wish of naming a patient room in CHOP’s Buerger Center for Advanced Pediatric Care. They raised a total of $15,000, partly for neruo-onology research, through donations in honor of Luca’s 7th birthday and a trike-a-thon.

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May Is for Miracles May, Nationwide • Throughout the month of May, many of CHOP’s corporate partners sold Miracle Balloons to raise funds for Children’s Miracle Network at CHOP.

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Pediatric Stroke Awareness Dinner May 2, Florence Township Community Center, Florence, N.J. • The event featured dinner, a basket auction, a magician, balloon art, a photo booth and more, raising $4,400 for pediatric stroke research at CHOP.

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Big Hearts to Little Hearts Golf Outing May 5, Medford Village Country Club, Medford, N.J. • Participants enjoyed a round of golf, lunch, dinner and a great auction, raising $15,000 for the Cardiac Center at CHOP.

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The Philadelphia Wine & Food Festival May 10, the Simeone Foundation Automotive Museum, Philadelphia • The annual festival presented by Philadelphia magazine and Fine Wine & Good Spirits featured more than 600 wines and food from fabulous restaurants around Philadelphia. The evening raised $10,000 to benefit the Division of Gastroenterology, Hepatology and Nutrition at CHOP.

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Food Phight 5K May 16, West Chester, Pa. • The fourth annual Food Phight 5K raised over $155,000 for the Center for Pediatric Eosinophilic Diseases. Rain canceled the run, but did not dampen the spirits of those who attended the after-party at Barnaby’s, which included food, beverages and live music by Harry Giovan.

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American Heritage Car Show May 17, American Heritage Federal Credit Union, Philadelphia • American Heritage Federal Credit Union and 98.1 WOGL hosted their 11th Annual Classic Car Show, which raises funds for the credit union’s Kids-N-Hope Foundation. The event raised $10,000 to benefit the Music Therapy Program at CHOP.

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Family Financial Centers Gala for CHOP May 17, the Standard Club, Doylestown, Pa. • The night included wine, beer and appetizers followed by live entertainment, including Brandon Andrus and Denise Payne Worley (“Jersey Boys”), Alicia Albright (“Wicked”) and more. The gala raised $6,000 for diabetes research at CHOP.

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Freedom Credit Check Presentation May 27, The Children’s Hospital of Philadelphia • Freedom Credit Union donated $1,100 — raised through a “Casino Royale” night for employees and guests — to Children’s Miracle Network at CHOP.

U PC O M I NG EVE NTS FALL 2 0 14

Blue Tag Gala

®

2014

Saturday, Oct. 25, 2014, 6 – 11 p.m.

•

Benefiting the Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia

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Grand Ballroom – The Hyatt at The Bellevue, Philadelphia

10 a.m.★ Villanova University Stadium

www.bluetaggala.org

CHOPBUDDYWALK.ORG

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Twelve Stories of Glass and Steel.

A Million Stories of Hope.

BUILDING HOPE is CHOP’s campaign to raise money for the Buerger Center for Advanced Pediatric Care, the finest pediatric outpatient facility in the world. Your name can be inscribed on a space in the Buerger Center for a donation of $500 or more.

Make your mark — visit chopbuildinghope.org to learn more.

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GiftofChildhood.org

Please recycle. Childrenâ&#x20AC;&#x2122;s View is printed on 55 percent recycled paper and 30 percent post-consumer waste paper.

LEAVE A LEGACY

of Hope and Healing Permanently link your life story with hope for children like Roman, 2, who received the care he needed to treat his chronic thoracic insufficiency.

By leaving a gift for CHOP in your will or trust, or by beneficiary designation, you wonâ&#x20AC;&#x2122;t affect your current cash flow, and you can change your decision at any time. No gift is too small, and we invite you to make your future gift in honor or memory of a loved one.

To create your own legacy of hope and healing, contact Tom Yates, director of planned giving: 267-426-6472 or yatestg@email.chop.edu.

Gift of Childhood.org /plannedgiving

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Help save the lives of future generations of children like Roman by leaving a gift to CHOP through your estate.

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