Children's View Fall 2013

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Fall 2013

Children’s

special Issue

Building Hope The Buerger Center for Advanced Pediatric Care will revolutionize care for children.


the view from here It is ironic that after years of writing “The View From Here,” I finally have the opportunity to take the subject literally. Because as I look out my office window, I am

Officers

watching a big piece of CHOP’s future — the Buerger Center for

Tristram C. Colket, Jr., R. Anderson Pew Honorary Vice Chairmen

Advanced Pediatric Care — being built from the ground up. In what had been an empty lot across the street from the

Mortimer J. Buckley Chairman Mark Fishman Vice Chairman

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

Children’s Seashore House, the Buerger Center is rapidly taking

Clark Hooper Baruch Secretary

shape; each week, it looks more and more like the architects’

Anthony A. Latini Treasurer

renderings you see in this magazine. When it opens in 2015, the Buerger Center will be the new home to many outpatient clinics currently in the Wood Center and Children’s Seashore House. It not only gives us much needed room to grow, but it also allows us to create a truly advanced new model of outpatient care. In this special issue of Children’s View, I invite you to learn more about this exceptional effort.

Thomas J. Todorow Assistant Treasurer Jeffrey D. Kahn, Esq. General Counsel & Assistant Secretary

( Page 4 ) has made a record-breaking $50 million commitment to CHOP’s future, but to build the nation’s most forwardthinking pediatric outpatient center, we need the entire CHOP community to rally together.

Children’s Executive VP & Chief Development Officer

Stuart Sullivan Assistant VP, Communications & Donor Relations

Mark Turbiville Editor

Facilities are so much more than simply locations for office visits or rooms with laboratory equipment. For a parent and child going to the doctor, the Buerger Center will transform their experience. There are many opportunities at all levels to support the center and leave your mark at CHOP. We are calling this campaign “Building Hope,” because with your help, that is exactly what we are doing.

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

D. Shuchman • Kornelis Smit • Joseph St. Geme, M.D. • Binney Wietlisbach • Nancy Wolfson • Dirk E. Ziff Ex-Officio

Paula Agoso, M.S.N., R.N. • Tami Benton, M.D. • Robert Doms, M.D., Ph.D. • Jeffrey A. Fine, Psy.D. • William J. Greeley, M.D., M.B.A. • Diego Jaramillo, M.D., M.P.H. • Ralph Wetmore, M.D. Emeritus

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

Margaret M. Jones Assistant Secretary

More than any facility in CHOP’s history, the Buerger Center is being built by philanthropy. The Buerger family

Board of Trustees N. Scott Adzick, M.D. • Steven M. Altschuler, M.D. • Clark Hooper Baruch • 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 • John Milligan, C.P.A. • Akiko M. Miyashita • Asuka Nakahara • Jeffrey E. Perelman • R. Anderson Pew • Gerald D. Quill • Daniel T. Roble • David B. Rubenstein • Anne Faulkner Schoemaker • Salem

Julie Sloane

Writers

Louis Bell, M.D. Lorraine Drouin Fawn Fitter Susan Hunt Joy Manning Eugene Myers Pia Sarkar Photography

Ed Cunicelli Lexi Logan Kevin Monko

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

David Podrost Kathy Smith

For information about making a contribution to support CHOP, call 267-426-6500 or visit GiftofChildhood.org.

Production

Printed by

Design

Kimberly Caulfield Nicole Keane Kate Lucas

LLC

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.

© 2013 The Children’s Hospital of Philadelphia, All Rights Reserved.


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special Issue

cover story

Children’s

Opening in 2015, the Buerger Center for Advanced Pediatric Care will revolutionize outpatient care at CHOP and across the nation.

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The Joshua Kahan Prom, a magical cancer survivor, the 1,000th fetal surgery patient, and more

20 Volunteers in

Philanthropy

A season of fabulous fundraising events, including the 57th Annual Daisy Day Luncheon & Fashion Show

On the Cover: The Buerger Center for

Advanced Pediatric Care

Historic Generosity A family’s gift will make a difference for generations to come.

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A Look Inside Features and fun facts about the Buerger Center

Treating Children, Touching Lives Meet some of the patients who will benefit from the new facility.

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Make Your Mark Ways you can support the center


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If you have visited the Main Hospital recently, you may have noticed a giant structure of steel beams across the street, rising higher with each passing day. When it opens in 2015, there will be 15,294 tons of steel in the building, and CHOP will open the doors on the nation’s most state-of-the-art pediatric outpatient care facility:

the Buerger Center for Advanced Pediatric Care. As the 12-story Buerger Center takes shape, the flurry of construction has been generating interest from passersby, as well as little faces pressing their noses to South Tower windows or watching from the rooftop Sea Garden at Children’s Seashore House. Many of those curious patients will soon visit that building for their outpatient appointments — 200,000 each year. Everything about it has been designed for the ideal patient experience, emphasizing shorter and smoother visits and less stress. The center’s 2.6-acre outdoor plaza and 14,000-square-foot roof garden will offer plenty of room for play and relaxation. Five levels of underground parking for 1,500 vehicles will make it easier than ever to get to the Hospital. Electronic check-in and preregistration will mean shorter wait times. Waiting areas will be filled with natural light and dotted with “wait, play, learn” areas to distract patients and their siblings with educational toys and games. Many of the clinics currently in the Wood Center and Children’s Seashore House will relocate to the 700,000-square-foot Buerger Center in 2015, to be joined by others in the years that follow. To provide a convenient trip for children who see multiple specialists in a single visit, clinics will share space, forming “neighborhoods” of related specialties. The center is built for collaboration too, among clinical staffs as — Eugene Myers well as with CHOP’s medical researchers working nearby. Opposite: An architect’s rendering of the Buerger Center for Advanced Pediatric Care This page: The Buerger Center’s dining concourse will have indoor and outdoor seating.

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Historic Generosity A family’s gift will make a difference for generations to come.

Every family has had important conversations at the dinner table, but this one literally was historic. Reid Buerger sat down with his wife, Krista, his parents, Connie and Alan, and his brother, Grant, to suggest that they should give away a fortune t­ o help CHOP build a revolutionary new medical facility. The Buerger family, living in the Philly suburbs, had been longtime supporters of CHOP and had made big gifts before to several charities, but what they were considering was much larger. At $50 million, it would ultimately be the largest gift in CHOP’s history.

ABOVE: The street-level entrance to the Buerger Center will be covered by a glass canopy.

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Left to Right: Connie and Alan Buerger; Krista and Reid Buerger; Grant Buerger

The idea was sparked four years earlier when Krista was pregnant with their first child. “Becoming a parent changes the way you see the world,” Reid says. “I began thinking about what it meant, not just to my family but the greater community, to have a place like CHOP here in our backyard. I wanted to learn more and become more involved.” He began volunteering to serve on committees, meeting with hospital leadership and eventually joining the Board of Trustees. He spoke with CEO Steven Altschuler, M.D., about the Hospital’s most critical needs. Altschuler showed him the plans for CHOP’s new state-of-the-art outpatient center. “When I looked at the renderings,” says Reid, “I didn’t see glass and steel. I saw a place that could change the lives of children and their families forever. That’s when I started talking to my family about doing something special to make the center a reality.” Connie and Alan Buerger founded Coventry, which created the secondary market for life insurance and pioneered the resulting life settlement industry. As business leaders, their accomplishments are legion. “Giving back to the community has always been very important to us,” says Alan. “We focus our philanthropy on medicine, education and the military.” “CHOP holds a special place in our hearts,” says Connie. “Our sons went there, our grandchildren go there now. There are few words that can adequately describe the impact they have on the lives of so many children and their families.” On June 25, the Hospital announced the $50 million gift from the family and publicly unveiled plans for its new state-of-the-art outpatient building, named in their honor: the Buerger Center for Advanced Pediatric Care. “One wonderful part of this experience is the stories we’ve heard,” says Connie, “from friends, employees and even strangers, telling us how CHOP has touched their lives, whether it’s been their children, nieces, nephews or — Mark Turbiville friends’ children — it’s really extraordinary.”

A Capstone to the Best Year Ever The Buerger family’s $50 million gift was not only the largest gift in CHOP’s 158-year history, but it was also one of the largest gifts ever to a building in Philadelphia. It is a cornerstone in the Building Hope campaign, whose goal is to raise $100 million for the Buerger Center. The Buergers’ gift took CHOP to the halfway mark, and many other generous families have pushed the total raised so far in excess of $75 million. See Page 12 for ways that you can put your own name on the Buerger Center and help us realize this building, which will play a central role in the lives of so many children. The Buergers’ gift also provided an incredible high point in fiscal year 2013, which ended June 30. CHOP raised a record $130.8 million through the generosity of more than 66,000 people. While some of these funds went to the Building Hope campaign, others fueled lifesaving research; much-loved patient and family programs like Child Life, Education and Creative Arts Therapy; vital patient care programs; and much more. Philanthropy provides the margin of excellence at CHOP, an excellence that our patient families deeply appreciate. We could not do it without you! Fall 2013

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A Look INside 1

Connected Campus

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Advanced Technology

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Roof Garden

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Intuitive Design

An enclosed glass walkway will span Civic Center Boulevard, connecting the Buerger Center to Children’s Seashore House. State-of-the-art facilities will add high-tech touches to its high-quality care. It will be a paperless facility with efficient electronic check-in and check-out. A 14,000-square-foot outdoor space on the sixth floor will offer a tranquil setting for both recreation and rehabilitation sessions. Bright, open spaces, easy navigation and clear signage will ease stress for visiting families and make it easy to find your way around the building.

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Easy Access

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Landscaped Plaza

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Neighborhoods of Care

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LEED Silver Certified

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A five-level underground parking garage will accommodate up to 1,500 vehicles and make arrival and departure a simple and pleasant experience. A 2.6-acre plaza will provide a safe, open area for play, entertainment, relaxation, reflection and emotional recharging. Family-centered care will be offered through “neighborhoods,” groups of related specialties sharing clinical space that will simplify visits for patients and their families. LEED certification from the U.S. Green Building Council is a measure of eco-friendly construction practices and energyefficient building. Even the building itself is committed to a healthier future for children!


Did You Know? At 14,000 square feet, the Buerger Center roof garden is larger than the Sistine Chapel ceiling.

The Buerger Center will have underground parking for 1,500 vehicles. If you were to stack those spaces end to end lengthwise, they would be taller than Mount McKinley, the highest mountain peak in the U.S.

The Buerger Center will open 160 years after the first CHOP building opened on Blight Street (now Watts).

At 700,000 square feet, the Buerger Center will be nearly 13 times larger than the White House and have twice as many floors. It will take a total of

1.7 million man-hours

to build the Buerger Center, equivalent to one person working 24 hours a day for nearly 200 years.

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The site was formerly home to the Philadelphia Convention Hall and Civic Center, which was visited by Martin Luther King Jr., Pope John Paul II, Nelson Mandela and the Beatles.

The building contains 15,294 tons of structural steel, which is equal to‌ 68 Statues of Liberty 3,824 Elephants 1,224 School buses 14,706 Liberty Bells

The 2.6-acre

outdoor plaza is half the size of Rittenhouse Square.

Even though the Buerger Center is named for the Buerger family, there are more than 500 other opportunities to make your mark on the building. (See Page 12.) To build the center’s foundation and parking garage, 230,000 cubic yards of rock, dirt and gravel were removed from the site. If spread evenly across a football field, the pile would be 100 Fall 2013

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cover story

Treating Children, Touching Lives More than a dozen specialties will move

to the Buerger Center in 2015, including Orthopedics, Rehabilitation, Oncology and the Alex Scott Day Hospital, the Center for Childhood Communication and Radiology. Each of these programs will see dozens of children each day — 200,000 total visits every year — filling the Buerger Center with families who seek the best pediatric outpatient care available. The Buerger Center will be more than the sum of its walls and windows; it will become a place where families find answers, healing and hope. In the coming pages, you’ll meet five CHOP patients who have found all that and more at some of the outpatient programs that will move into the Buerger Center.

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Callie, 18, with Kristie Rooney, radiology technologist CT

Radiology

When Less Is More As she prepared to attend her senior prom in May, 18-year-old Callie Monroe worried that her bright red gown wasn’t exactly right. She planned to wear her hair in a side-swept updo and worried that it wasn’t the perfect look. But one thing Callie doesn’t worry so much about as she heads off to Wesleyan University in Connecticut is the radiation she has been exposed to during dozens of X-rays at CHOP. Since Callie was 7, she has come to CHOP many times to be treated for pneumonia, which she seemed to get almost annually. And each visit meant heading to Radiology for imaging exams. The Radiology unit performs more than 210,000 imaging procedures each year. Many help diagnose and treat pediatric cancer, cardiac and neurology patients whose complex diseases require constant imaging. While these tests are vital for diagnosis and treatment, X-rays and many scans expose a patient to radiation, which can contribute to long-term health problems. “We know that the less radiation we give, the better it will be for patients,” says Diego Jaramillo, M.D., M.P.H., CHOP’s radiologist-in-chief and a founding member of the Alliance for Radiation Safety in Pediatric Imaging. The organization has established nationally regarded “Image Gently” guidelines that advise keeping radiation doses as low as reasonably achievable. Whether a patient needs to turn to radiology frequently or just once, less radiation is always better. This is especially true for children, because they are smaller and their cells multiply faster than adults’. While many hospitals use the same amount of radiation for kids and adults, CHOP takes a more fine-tuned approach. In fact, the department’s focused effort has led CHOP to offer more low-dose options than any other hospital in the region. When the Radiology unit moves to CHOP’s new Buerger Center for Advanced Pediatric Care, it will bring the already state-of-the-art center even more up to date, with the newest equipment across the board, including the EOS, a cutting-edge tool that can create an extremely detailed image while using much less radiation than an X-ray. CHOP has the only EOS machine in Pennsylvania. It has now been two years since Callie has needed X-rays or other imaging at CHOP, and she hopes this positive trend will continue. Both Callie and her mother, Tracy, take comfort in knowing that if Callie does need its services, the Radiology unit is just a drive away from her school. “There’s no other hospital where I would feel as confident in Callie’s care,” says Tracy. — Joy Manning


Center for Childhood c o m m u n i c at i o n

The Sound of Success When Phoenix Logan failed his first newborn hearing screening, his mother, Lexi, took the news in stride. When he failed it a second time, she started to get anxious. At 3 weeks old, Phoenix was given a final test — and he failed again. “It was like someone ran over me with a Mack truck,” recounts Lexi. As time went on, her worst fears were confirmed: Phoenix became profoundly deaf, and hearing aids couldn’t help him. That’s when his parents turned to CHOP and its Cochlear Implant Program. A cochlear implant is an electronic device that bypasses damaged parts of the inner ear (cochlea) and directly stimulates the auditory nerve. It consists of an external component that sits behind the ear as well as an internal component that is surgically placed under the skin. The implant does not restore normal hearing but instead gives a deaf person a useful representation of sounds in his or her environment. Most children who receive the implants are between 1 and 5 years old, and CHOP is currently implanting some as young as 9 months. Coupled with extensive speech and hearing therapy and support, the implants can help many children to develop speech, especially during the critical period when they are first learning language skills. For others who may also have multisensory or cognitive impairments, cochlear implants can provide a connection through sound that helps families nurture and care for their child. In the last year, CHOP’s Cochlear Implant Program performed 81 cochlear implants, and it currently tracks more than 800 children. In 2015, the program, along with the other outpatient hearing and language support programs at the Center for Childhood

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Communication, will move to a larger space within the Buerger Center, giving it more room to grow. A new observation room with a two-way mirror also will allow extended families to watch the child’s implant activation. Phoenix received his first implant for his right ear when he was 2 and his second implant for his left ear when he was 5. As each implant was gradually activated and programmed, Phoenix started to hear more and more: the leaves rustling under his feet, the windshield wipers in the car, the beeping of a microwave. “There are these aha moments and you can see it in his eyes, and you think, Oh my God, he heard that!” Lexi says. Both before and after the surgery, Phoenix and his family met with audiologists, speech-language pathologists, teachers of the deaf and social workers. “CHOP just has this really amazing way of supporting the whole family,” Lexi says. “It’s a combination of warmth and professionalism.” Now 11, Phoenix has thrived since receiving the implants, which he only takes off when he goes to sleep at night or when he goes swimming. After years of speech therapy, Phoenix no longer needs a speech-language pathologist. In fact, he is responding so well to the implants that he landed the role of Templeton in this summer’s Town and Country Players production of “Charlotte’s Web.” Of course, it may also have had something to do with his personality. “I’m sort of like a ham,” he admits. Although there are times when Phoenix feels self-conscious about his implants — he changes the batteries on them when no one is looking — he is not letting anything hold him back. He loves sports, especially skateboarding, swimming and basketball. “There are definitely a lot of challenges, but I’ve never had any challenges that were too hard,” he says. — Pia Sarkar Fall 2013

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Physical and Occ u p a t i o n a l Therapy

Smoothing the Road to Recovery

Paul, 14, with occupational therapist Todd Levy

One winter morning, Paul Tursi told his kindergarten teacher that his eyes hurt. Two hours later, when he started clutching his head in the lunchroom, his teacher discovered he could no longer speak or use his right arm. Paul had had a stroke. Paul, now 14, has spent the last eight years working to overcome the resulting weakness on his right side. He has come a long way in that time. The shy, quiet child who couldn’t move his right arm at all is now a straight-A student who goes to Boy Scouts, takes karate lessons and plays on a sled hockey team — all with the support of his parents, Kathy and Paul Sr., CHOP’s Stroke Program and the Hospital’s rehabilitation specialists. Occupational therapist Todd Levy is among the team who worked with Paul since the beginning of his journey back from the stroke. Along the way, Levy adapted a hockey stick with a special grip so that Paul could take a slap shot even without full use of one arm. Both physical and occupational therapists used Bioness neurostimulation devices with Paul, initially to help him lift his right foot when he walks, and more recently to help him open his ordinarily tightly clenched right hand. Paul was one of the first patients at CHOP’s Occupational Therapy Outpatient Clinic to use a Bioness device on his hand; after just a few weeks of using it, Paul’s hand was more open and relaxed. “It’s a weird tingly feeling, but I like it,” Paul says about the device, which stimulates the nerves in his hand with electrical 10

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impulses. “When I got it, my hand was tight, but now it opens, so now I can spar in karate with both hands.” For patients like Paul, whose care requires coordination between multiple outpatient clinics like occupational therapy, physical therapy and speech therapy, the new Buerger Center will make his visits more convenient, as these specialties will share space. In addition, many features in the building will enhance care: The new rehab gym will be twice the size of the current one, with a two-story climbing wall and floor-to-ceiling windows overlooking the landscaped plaza. Occupational Therapy will have a larger kitchen for practicing activities of daily living, as well as more private treatment rooms. Rehab sessions can also roam farther afield; both the two-story lobby ramp and a path within the building’s roof garden will be designed for use with rehab patients. “Having a space that’s designed to improve interactions should be very helpful in coordinating care,” Levy says. “And having more room to work will make a big difference.” As for Paul, he says his hard work at the rehabilitation clinics has paid off. He used to come in for intensive therapy every week, but with his parents helping him practice his exercises regularly at home, he has been able to taper off to monthly visits. In everything from sports to playing games on his iPad, he says, “I can tell I’m getting better.” — Fawn Fitter


A l e x S c o t t D ay H o s p i ta l

Giuliana, 3, and Alyssa, 7

Sunday mornings at the Porchia household are times for family bonding. Dad Enrico loves to cook and leads their four kids in preparing breakfast while they share stories from the past week. Seven-year-old Alyssa has her own role in this ritual. “She makes the buttermilk pancakes,” says Enrico. “From scratch,” he adds with pride. He says that even though he taught her to make them, she now does a better job and that the flapjacks just don’t taste as good if anyone else wields the whisk. These Sunday mornings, complete with cartoons and coffee, give the family a much-needed chance to recharge. Alyssa and her 3-year-old sister, Giuliana, were born with beta thalassemia, a disease that decreases production of hemoglobin, an important protein in red blood cells, and also causes severe anemia, a shortage of red cells. This leaves the girls tired and vulnerable to life-threatening complications. It requires monthly blood transfusions that can take between two and four hours — an eternity for a kid. Alyssa has already endured numerous hospitalizations, including one life-threatening episode. The Porchias are proud of her courage. “It is amazing to watch Alyssa teach Giuliana how to be brave,” says Jennifer, the girls’ mom. When they come to the Alex Scott Day Hospital for transfusions, the big sister always starts her transfusion first so that her little sister knows it will be OK. The girls’ disease is closely managed by CHOP’s Thalassemia Program in the Division of Hematology, while their monthly blood transfusions take place in the Day Hospital. Between the transfusions and the ongoing clinical care they need, the Porchia family’s life revolves around CHOP. “We live nearby and couldn’t even consider moving away,” says Jennifer. It goes beyond convenience; when complications occur, quick access to care can be lifesaving. “The nurses are part of our family at this point,” says Jennifer. The staff knows that Alyssa is calm and quiet and loves to draw during her treatment while Giuliana, “a spitfire who has a personality and a half,” according to her mom, may need more entertainment and attention. Often the girls end up side by side in the same big blue recliner, flanked by their IV poles as they laugh along with “Doc McStuffins,” their favorite cartoon. Together, the Oncology Outpatient Clinic and the Day Hospital currently treat as many as 90 patients a day. “Most are here for blood transfusions or chemotherapy,” says Mary Anne Kent, R.N., M.H.A., the nurse manager. “Currently, we’re a little space-challenged.” Kent eagerly anticipates the additional square feet that will come when the Day Hospital moves to the Buerger Center in 2015. The new Alex Scott Day Hospital will have floor-to-ceiling windows that wrap around the room, providing a view of the plaza gardens below. It will also have two playrooms — one for younger kids like Alyssa and Giuliana, and a teen room that they’ll appreciate as they grow. For now, though, in spite of their health challenges, the girls enjoy just being kids, especially when they are making pancakes with their family or taking in some cartoons. — Joy Manning

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The Buerger Center for Advanced Pediatric Care is being made possible by Building Hope, a community-wide effort to raise $100 million toward its construction. Thanks to the Buerger family (Page 4) and their $50 million charitable donation toward the effort — the largest-ever gift to CHOP — we are well on our way. There are many ways to leave a permanent legacy at CHOP and a personal mark on the Buerger Center. Naming opportunities in and around the facility are available at all levels of support, and these can be a wonderful way to honor a loved one. The adjacent page offers a sample of naming opportunities for gifts of $500 to $5 million. To see others, or to make a gift, please visit chopbuildinghope.org.

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Buerger Center Naming and Recognition Opportunities $5 million – Rooftop Garden

A stunning green space, this 14,000-square-foot rooftop, accessed from the sixth floor, will provide unique healing areas for physical and horticultural therapies, as well as a peaceful place of reflection. Landscape architects will create perennial gardens, a water feature and more, all safely enclosed by a high glass wall.

$2 million – Physical Therapy Gym

A new physical therapy gym will add more than 5,600 square feet for rehabilitation programs. This state-of-the-art facility will have a two-story rock climbing wall, sports medicine area and mirrored studio space.

$1 million-$2 million – Clinical Areas

The Buerger Center will ultimately bring together all of CHOP’s outpatient services currently in the Main Building, Children’s Seashore House and the Wood Center. Unit naming opportunities include Radiology, Orthopedics, Rehab Therapies and more.

$500,000 - Sculpture Garden

Sculptural elements add a great deal of interest to a building, making it a place that children associate with whimsical, colorful fun. With philanthropy, we would install a sculpture garden within the landscaped plaza, which would surely be much admired by passersby.

$250,000 – Water Features in the Plaza Children naturally love water features, and the 2.6-acre landscaped plaza will be accented with three unique ones: two water walls and a winding canal feature. Each can be named with a gift of $250,000.

$100,000 – An Elevator Lobby on Clinical Levels

Patients will travel through the building using a central elevator bank. The light-filled elevator lobbies on each floor will face the landscaped plaza below.

$50,000 – Oncology Infusion Pods

Within the Alex Scott Day Hospital, there are numerous “pods” where children sit for hours as they receive infusions. Outfitted with recliners and televisions, these pods are a home away from home for the day.

$25,000 – Roof Garden Spaces

Individual spaces within the roof garden can be named in honor or memory of a loved one. These include several perennial and planter gardens. Limited spaces remain!

$10,000 – Patient Exam Rooms

Many clinicians and families have provided their input to help us design comfortable, functional and attractive examination rooms. Each can be named for a gift of $10,000.

$1,000–$10,000 – Plaza Paving Stones

Outdoor paving stones of varying sizes located in four specified areas within the landscaped plaza provide an opportunity to pay tribute to or recognize a loved one. Donors may reserve a paver with a gift of $1,000, $2,500, $5,000, $7,500 or $10,000.

$500 – Inscription on the Main Lobby Ramp Gifts of $500 will be recognized on the glass railing of the landing areas located on the Buerger Center’s main lobby walkway to the second floor.

To learn more about Building Hope and how you can make your mark on the Buerger Center, please visit

chopbuildinghope.org.

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today@CHOP

Magic Man

Among the children seated in the Colket Atrium, all eyes were on magician Chad Juros as he juggled three balls in the air, not missing a beat. Then the 25-year-old moved on to one of his favorite tricks: making a boom box disappear. Chad asked some volunteers to verify the box was under the cloth and then — voilà — it vanished into thin air. It was not lost on Chad that this was the same building he had called home for 17 months as a child when CHOP’s Cancer Center treated him for a leukemia relapse. Grateful for the care he received there, the Egg Harbor Township, N.J., resident now uses his talents to give back to CHOP. His personal story and his message of hope is something he shares during every magic show. That story began at age 3, when Chad was first diagnosed with leukemia. Four years later, he relapsed. To distract his son from pain and fear, Dr. Donald Juros performed magic tricks at Chad’s bedside and passed the time with videos about magic. “We did card and coin tricks,” recalls Chad. “It had to be things I could maneuver with my hands in bed.” Chad practiced the craft for hours while receiving his cancer treatments. In 1998, a few months after Chad went into remission, Donald Juros was diagnosed with a malignant brain tumor. Chad performed magic at his father’s bedside. “Every once in a while I got a little smile on his face, and that was worth everything right there,” says Chad. Sadly, Donald passed away at age 41, but his dying wish was for Chad to “spread the magic.” To honor him, Chad, along with his mother and sister, founded the Spread the Magic Foundation. It provides magical entertainment to children with cancer, and proceeds benefit cancer research at CHOP. Today, the Richard Stockton College of New Jersey graduate performs his magic all over the world, some events for charity, others for profit. Performing at the hospital last spring was bittersweet for Chad. “I was looking in these kids’ eyes and I saw myself,” he says. “I was in their place not too — Lorraine Drouin long ago. These children were still so happy in spite of their pain.”

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today@CHOP my CHOP hero

It’s aGirl!

CHOP welcomes its 1,000th fetal surgery patient

Starr Lynch, R.N.C. Nurse in the Garbose Family Special Delivery Unit since 2010 “Starr was my nurse during my son’s delivery. After I went through an awful night of contractions, what a relief it was to have her. She made sure I was OK in every single way. I will never forget her bringing in two extra blankets and making me into a cocoon so I could finally stop shaking and attempt some sleep. She was my biggest supporter while I was pushing and was absolutely fabulous with my fiancé, who had a major issue with the word ‘placenta.’ They joked all day. She was there for emotional support when my 1-day-old son was sedated for an MRI. She comforted me and made me feel like it was all going to be OK. My now-husband and I don’t know how we would have gotten through those few days without her. Seeing her big smile again at the Fetal Family Reunion this past year reinforced everything: She is a friend for life.” — Brittany Shelly, mother of Brayden, 2

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

Left to Right: Gideon and Jackie Oberio with their daughter, Audrey Rose, and N. Scott Adzick, M.D.

By the time Audrey Rose Oberio took her first breath, she had already undergone major surgery at Children’s Hospital. She was also born to instant CHOP celebrity as the 1,000th fetal surgery patient at the Center for Fetal Diagnosis and Treatment. Nineteen weeks into Audrey’s gestation, her parents, Jackie and Gideon, learned Audrey had a severe form of spina bifida, a birth defect in which part of the developing spine fails to close. Spina bifida can cause paralysis and many other problems. However, CHOP offered the family the hope of an improved quality of life for their daughter: a procedure to repair spina bifida before birth that was pioneered by N. Scott Adzick, M.D., CHOP Surgeon-in-Chief and medical director of the Center for Fetal Diagnosis and Treatment, and his team. Addressing spina bifida by operating

on the baby in the womb, months before birth, can improve neurologic function and increase the likelihood that a child would be able to walk independently. In March, CHOP surgeons operated on both Jackie and her unborn child and successfully closed the opening in Audrey’s spine. That important day in the Oberios’ lives also marked the 1,000th fetal surgery at CHOP. Since Adzick founded the center in 1995, it has cared for more than 15,000 expectant families and performed more surgeries in the womb than any other hospital. On May 28, Audrey was born in the Garbose Family Special Delivery Unit at a healthy 5 pounds, 8 ounces. Although it is too soon to know how spina bifida may affect Audrey, her doctors expect her to live a full, — Eugene Myers normal life.

Watch a video about Audrey’s birth at childrensview.org. Fall 2013

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MIDDLESEX

today@CHOP

MERCER

MONTGOMERY BUCKS

MONMOUTH CHESTER

PHILA. OCEAN

Finding CHOP Close to Home

DELAWARE

GLOUCESTER

NEW CASTLE

CAMDEN

BURLINGTON

SALEM ATLANTIC

It may be The Children’s Hospital of Philadelphia, but CHOP also makes many of its services convenient to families at dozens of sites throughout Southeastern Pennsylvania and Central and Southern New Jersey. In fact, the CHOP Care Network is the largest pediatric health system in the nation. How much do you know about CHOP’s services in your community?

CUMBERLAND

Primary Care Specialty Care Center CAPE MAY

Specialty Care & Surgery Center Specialty Care Center & Home Care Urgent Care Center

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Outside of the Main Hospital in Philadelphia, how many satellite sites make up the CHOP Care Network? A. 35 B. 45 C. 52 D. 75

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How many outpatient visits took place in the CHOP Care Network last year? A. 700,000 B. 800,000 C. 900,000 D. 1,000,000 Answers: 1) C, 2) D, 3) B, 4) A 5) D, 6) D

A Night of

STARS

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The After Hours Program has specially trained pediatric nurses who field calls when the Care Network’s offices are closed. How many calls did it get last year? A. 92,711 B. 108,304 C. 130,774 D. 182,492 Which of these CHOP Care Network sites is the largest? A. Voorhees Specialty Care Center B. King of Prussia Specialty Care Center C. Princeton Specialty Care Center D. Care Network West Chester

It was an evening straight out of Hollywood. Decked out in gowns and suits, the night’s celebrities paraded down the red carpet, under the balloon archway, past the “paparazzi” photo station. No detail was overlooked to make the seventh annual Joshua Kahan Prom at The Children’s Hospital of Philadelphia an evening to remember for children and families alike. The theme was “A Night of Stars,” and numerous television cameras were on hand as 100 patients partied alongside their families, clinicians and the Child Life team. Preparing for the prom was an elaborate affair, with dresses and suits in every size made available for patients. Stylists also curled and coiffed hair, apply makeup and paint nails. It took more than an hour for Marjorie, 16, to style her look. She wore a peach chiffon gown and accessorized with a pair of black and orange Nikes.

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Which of the following services can you get in the CHOP Care Network? A. Surgical procedures B. Newborn care C. Primary care visits D. All of the above How many of the 41 CHOP Care Network sites offering outpatient care have weekend hours? A. 11 B. 21 C. 31 D. All 41

The dance floor was packed with children, grooving to such hits as Psy’s “Gangnam Style” and the Black Eyed Peas’ “I’ve Got a Feeling.” Child Life further decked out the dancers with colorful tutus, LED-lit bowler hats, and green and pink feather boas. IV poles and wheelchairs? Just another accessory! Anyone tired or hungry from dancing could sample the buffet of burgers, chicken fingers and mini pizzas. A dessert station with


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

If you could give one gift to every child at CHOP to cheer them up,what would you give them?

Kenya age 8 • Oncology

“A dog, because it will make them feel better.”

“A million dollars to pay off their insurance.”

“A puppy, because they are cute.”

“Socks! The socks they have right now aren’t fun, and happier-looking socks would brighten your mood.”

Sara age 17 • GI

Rita’s Italian ice and a cake with mounds of white frosting were also on hand for the prom-goers. Open to patients of all ages, the prom is made possible every year by the Joshua Kahan Fund. Its founder and president, Jeffrey Kahan, was there and clearly having a blast. “For one night, nobody’s sick,” he said, looking at the happy faces around him. “Everyone has a smile. They’re not in a hospital, nor are their parents. The kids and families can get back to having fun.”

Abigail

Samsan

age 13 • Cardiology

age 10 • GI

“A stuffed animal, so they have something to hug.”

“A ‘Mario Kart,’ so they will be able to drive.”

Logan

Matthew

age 23 months • Cardiology

age 5 • Cardiology

One of the youngest attendees, 5-monthold Jayden, might have been too young to understand prom, or even why he was in the Hospital. But whether it was the LED-star wand firmly in his grasp or the scene of joy around him, one thing was for certain: He had — Susan Hunt a twinkle in his eyes.

To see more photos from the Joshua Kahan Prom, go to childrensview.org.

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today@CHOP

Spotlight On:

Clinical Laboratories To most patients, the clinical laboratories are a great mystery. Someone draws a child’s labs, perhaps by collecting blood or urine, and then minutes, hours or days later, the results come back, as if by magic. It all seems effortless and invisible — because a group of people working behind the scenes do their jobs very well. The clinical laboratories at CHOP perform 2.1 million tests every year, or an average of 5,700 every single day, around the clock. About 60 percent of them are done by the Core Labs, which perform common tests like blood cell count and basic metabolic panels. There are also a dozen specialized labs, including

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microbiology, virology, genetics, anatomic pathology, the metabolic disease laboratory and the blood bank. Just how do these lab specimens get from a child’s room to the labs? The answer may surprise you: through the walls! With a “whoosh,” an elaborate system of pneumatic tubes delivers samples in sealed specimen bags to the fifth-floor labs from units all over the Main Building. Others arrive by courier from CHOP Care Network locations. The samples get logged and sorted almost immediately. Tests labeled “stat” will be done in an hour or less, and all other routine tests within 90 minutes. (The average processing

time is 35 to 40 minutes.) Others with greater complexity, such as genetic tests, may require several days or even weeks. The labs themselves are quiet, focused places, with many medical technologists in coats and gloves hunched over petri dishes, microscopes or computers. Nearly 300 people work in the clinical labs, and their experience — they average 24 years working at CHOP — helps them achieve near-perfect accuracy. They are rarely seen by patients, but their work is incredibly important: Seventy percent of diagnoses made at CHOP are based on lab results. — Julie Sloane


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: bullying. B y L o u i s Be l l , M . D .

Standing Up to Bullying It’s understandable when kids are less than enthusiastic about going back to school in the fall, but for some, their reluctance may be more than just homework avoidance. Bullying causes many kids to dread school, and unfortunately technology has changed the landscape of bullying. But with a little effort, parents can help prevent and manage this all-too-common childhood experience. Stephen Leff, Ph.D., a CHOP psychologist and an expert on bullying and victimization, defines bullying as aggressive or mean behavior that is repeated over time, typically in unstructured school settings such as playgrounds. Bullying takes many forms: physical or verbal abuse; social aggression, such as spreading hurtful rumors or excluding classmates from activities; and cyberbullying, which includes sharing pictures or messages electronically through Facebook and other social media, text messages or email. Cyberbullying can be especially stressful because it spreads so quickly and publicly and isn’t limited to school grounds. Kids may not mention they are being bullied because they are embarrassed, or, in the case of cyberbullying, they may worry that computer access or cellphones will be taken away. But you can be on the lookout for some warning signs: Some obvious clues include a child coming home with torn clothes or describing peer relationships negatively. But the clues may be subtle as well. Is your child eating or sleeping less? Is she missing school more often because of headaches and stomachaches? None of these in isolation means a child is being bullied, but the more signs you observe, the more important it is to discuss bullying with your child. The best thing parents can do is develop lines of communication early on

The best thing parents can do is develop lines of communication early on with their kids.

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

with their kids. Talking with them openly for even five minutes a day makes it more likely that they will share problems when they arise. If they say something that concerns you, take it seriously — but don’t overreact. Rather than approach other parents directly, try to resolve the conflict through a school mediator; some schools even designate an individual to deal with child behavior and bullying. Dr. Leff and his colleagues work with teachers and school administrators to develop bullying interventions in schools. Although cyberbullying is still fairly new, early research suggests that taking away or limiting technology is ineffective in preventing or resolving conflicts. Instead, make sure your child understands that the Internet is not anonymous and harmful messages can be tracked back to the bully. It may be difficult for parents to keep current with technology and social media, but they are a big part of children’s lives, so advise kids to be cautious about what they share online. It’s always important to support your kids and help them understand that they aren’t alone, that bullying can happen to anyone, and that it isn’t OK. You can also teach them to seek help from teachers if they’re concerned and that bullying in all its forms is harmful, even if the impact can’t be seen directly.

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volunteers in philanthropy s ig natu re eve nts

57th Annual

Daisy Day Luncheon & Fashion Show

Left (left to right): Daisy Day Committee Chair Nancy Wolfson; Andrew Dershaw and Ida Simonsen of Stella McCartney USA; CHOP CEO Steven Altschuler, M.D.; Randie Berman of Saks Fifth Avenue Philadelphia; and Patient Speaker Laurel Escoll. Right (left to right): Honorary Chairs Tina Snider and Ed Snider, Laurel Escoll, and Featured Speaker David Sherry, M.D. Judging by the eager crowd of women streaming into the Hyatt at The Bellevue on May 2, you would have thought Bradley Cooper was filming a new blockbuster inside. Such is the level of enthusiasm for the annual Daisy Day Luncheon and Fashion Show. By the end of the day, it would raise more than $1.6 million for the Pain Management Program at CHOP, making Daisy Day one of the largest daytime fundraisers in the country. Men in immaculate suits and women in flowing dresses and bright hats filled the auction room, bidding on jewels, spa services and once-in-a-lifetime trips. At the luncheon, patient speaker Laurel Escoll, whose mother, Tina Snider, and the Snider family served as honorary chairs of the event, held the audience rapt as she shared her moving experience as a patient at CHOP

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— you could hear a pin drop. The denouement of the event was an exclusive glimpse at designer Stella McCartney’s Fall 2013 line of clothes. But for all the fashion and glamour, the day is really about family and tradition. “What makes this event so special is seeing generations come here together, grandparents, parents and children all having a great time for charity,” says Nancy Wolfson, who just celebrated her 15th year as chair of the event. “It’s about nurturing a sense of giving and encouraging others to give for a cause.” Daisy Day was founded in 1953 by the Auxiliary of CHOP as a grassroots fundraising campaign. Volunteers sold paper daisies on the streets in exchange for donations. They picked the daisy because it symbolized the innocence of children.


volunteers in philanthropy s ig natu re eve nts

By the 1960s, the campaign had captured the heart of the city. The mayor set forth annual proclamations celebrating Daisy Day. Philly banks and big department stores like Wanamaker’s offered up window displays to publicize the effort. Today, Wolfson and the Daisy Day Committee carry the torch with gusto, making it a can’t-miss affair on the social scene and a powerhouse for good. During the last 15 years, Daisy Day has raised more than $15 million, funding many research and clinical initiatives at CHOP. “Planning the event is really a yearlong process,” says Wolfson. “The committee works so hard to make it a fun, memorable experience.” — Mark Turbiville

2013 Daisy Day Luncheon Committee

Nancy Wolfson, Chair Madlyn Abramson Ashley Albrecht Ashley Baiocchi Helaine Banner Marce Becker Margie Beifeld Cathy Black Traci Ernst Juliette Faughnan Judy Felgoise Ann Frankel Mali Gertel Beverly F. Goldberg Andrea Heffler Karen Horn

Cheryl Koons Marcy Kramp Lori Levin Nancy Minnick Carol Momjian Donna Obrecht Ellen Perlmutter Joanne Schell Steven Schiff Elizabeth Sherman Donna Slipakoff Tina Snider Debbie Stamm Linda Steinberg Stacey Jacovini Storm Emily Thalheimer-Reiner

CHOP Golf Classic On June 17, 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 $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 Eagles wide receiver Mike Quick and Merrill Reese, the voice of the Eagles.

Huddle Up for Autism On April 14, CHOP partnered with the Philadelphia Eagles to host an autism family fun and awareness day at Lincoln Financial Field. The event brought in more than 3,000 participants for field and locker room tours, arts and crafts, games, face painting and magic shows and raised $34,000 for the Center for Autism Research.

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Cougar Corporation Jan. – May, Downingtown High School East, Exton, Pa. • Students in an entrepreneurship class raised $5,000 by holding various events and sales at the school to benefit brain tumor research.

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4th Annual CHOP Chari-tea Feb. 2, Newtown Presbyterian Church, Newtown, Pa. • The tea party hosted by the Silla family raised $6,150 for the Child Life, Education and Creative Arts Therapy Program.

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National Pancake Day Feb. 5, participating IHOP locations • The event, which collected donations for paper icons and short stacks of pancakes, raised more than $33,000 for Children’s Miracle Network at CHOP. Cupid’s Cranium Run Feb. 16, Pope John Paul II High School, Royersford, Pa. • More than 600 participants registered for the At Least Kids Foundation inaugural run. This 5K raised $15,000 for brain tumor research.

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Big Hearts to Little Hearts Check Presentation Feb. 25, The Children’s Hospital of Philadelphia • Big Hearts to Little Hearts presented a check for $100,000 for the Cardiac Center. The funds were raised through a number of events, including a gala, golf outing and its annual Heart Walk on the Belmar, N.J., boardwalk.

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Max Steinman’s Concussion Awareness Dance at Beat Street March 1, Beat Street, Huntingdon Valley, Pa. • Kids came out and danced to raise awareness and more than $1,000 for pediatric concussion care as part of Max Steinman’s bar mitzvah project.

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Spencer Levy’s 6th Annual Cookies for Kids Bake Sale Month of March, Levy home, Cherry Hill, N.J. • Spencer took orders and baked cookies from scratch for the community. His cookie sale raised $1,382 for the Child Life, Education and Creative Arts Therapy Program.

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Rite Aid Balloon Campaign March 24 – May 11, Rite Aid locations nationwide • Rite Aid teamed up with the animated movie “Epic” this year to help promote its annual balloon icon campaign, which raised $430,000 for Children’s Miracle Network at CHOP.

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Chelsea Scores for CHOP March 30, Red Bank Armory Ice Complex, Red Bank, N.J. • Hockey teams squared off on the ice and raised more than $2,000 to benefit CHOP programs, including the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit.

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University of the Sciences Sean Kingston Concert April 5, Bobby Morgan Arena, Philadelphia • Various activities and a concert by Sean Kingston raised $5,310 for the Child Life, Education and Creative Arts Therapy Program.

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2nd Annual Strike Down Pediatric Cancer April 13, 30 Strikes Bowling Center, Stratford, N.J. • Team Joey D Foundation hosted its second annual bowling night. The event raised $12,000 benefiting the Cellular Immunotherapy Fund.

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Julia Kivlin Memorial Volleyball Tournament April 26, Downingtown High School East, Exton, Pa. • This fun night of volleyball raised $5,229 for brain tumor research. Jewels for Julia also sold bracelets at the event to support the cause.

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Bryce’s Bridge of Hope 3rd Annual Wine Tasting April 27, RiverWinds Community Center, West Deptford, N.J. • More than 300 guests enjoyed wines from around the world, hors d’oeuvres and gift basket auctions, raising more than $15,000 for brain tumor research.

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2nd Annual Sweets for Smiles Bowling Night May 9, North Bowl, Philadelphia • Employees and vendors of Frankford Candy came out for a night of bowling, prizes and food that raised more than $32,000 for CHOP. Philadelphia Wine + Food Festival May 10, Lincoln Financial Field, Philadelphia • Philadelphia magazine and Fine Wine & Good Spirits partnered for this event, which offered more than 600 wines and food from some of Philadelphia’s top chefs. A silent auction and a portion of the ticket sales raised more than $14,000 for CHOP.

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Food Phight 5K May 17, West Chester, Pa. • This 5K run, hosted by the Harris and Conn families, raised more than $170,000 for the Center for Pediatric Eosinophilic Disorders. The post-race reception was held at Barnaby’s of America.

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Hope for Ella Check Presentation May 18, Holly Glen Elementary, Williamstown, N.J. • Hope for Ella raised $10,000 for neurofibromatosis research through a comedy show featuring Disney comic Brian Stanton and a walk at Holly Glen Elementary.

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American Heritage Federal Credit Union and 98.1 WOGL Classic Car Show May 18, American Heritage Federal Credit Union, Philadelphia • This annual car show, sponsored by the Kids-N-Hope Foundation, included 265 cars and raised $9,000 for the Music Therapy Program.

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Workout with Joe June 2, Evolution Fitness, Cherry Hill, N.J. • Joe Flacco, quarterback for the Baltimore Ravens and reigning Super Bowl MVP, led a workout for kids that raised $3,630 for CHOP.

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Racing for a Miracle June 2, Dover International Speedway, Dover, Del. • Marcos Ambrose, sponsored by Stanley and DeWALT, raced for a miracle while being cheered on by CHOP families and fans. The event raised funds for Children’s Miracle Network at CHOP through the Ace Hardware Foundation.

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Peyton’s Promise 5K Run/2K Fun Run and Walk June 8, 43rd and Promenade, Sea Isle City, N.J. • This 5K run and 2K walk in honor of Peyton Laricks raised $37,000 for congenital diaphragmatic hernia research.

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Benefiting the Buerger Center for Advanced Pediatric Care

Saturday, Oct. 19, 2013 • The Please Touch Museum, Philadelphia • carouselball.org Grab the Brass Ring for America’s Best Children’s Hospital!

The Children’s Hospital of Philadelphia and World Poker Tour Foundation

“All In” for Kids Poker Tournament 2013

Honorary Chairs: Daniel Shak and Family Benefiting Pediatric Palliative Care Thursday, Nov. 14, 2013 • Mandarin Oriental, New York City • allinforkids.org

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Twelve stories of glass and steel. A million stories of hope.

Breakthroughs, answers, insights, cures. Extraordinary things will happen inside the new Buerger Center for Advanced Pediatric Care — thanks to an extraordinary $50 million gift made by Connie and Alan Buerger, Krista and Reid Buerger, and Grant Buerger. Fueled by the immense generosity of the Buerger family, along with the growing contributions of many individuals, we’re building the most advanced facility for children’s outpatient care in the world. And with it, we’re building hope. Won’t you join us? • chopbuildinghope.org


GiftofChildhood.org

Please recycle. Children’s View is printed on 55 percent recycled paper and 30 percent post-consumer waste paper.

Leave a Legacy

of Hope and Healing We invite you to link your life story with CHOP’s 158-year journey of making the world a healthier and safer place for children. By naming CHOP in your will, or as a beneficiary of a retirement plan, you won’t affect your current cash flow and you can change your decision at any time. No gift is too small, and we welcome you to honor a loved one with your future gift or use it to create an endowed fund to provide lasting support. 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

Quinn | 5 months | Cardiac


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