Childrens's View Fall 2011

Fall 2011

faces

cancer

Also Inside Selena Gomez visits THE VOICE

The View from Here

Board of Trustees Officers Mortimer J. Buckley III Chairman Mark Fishman Vice Chairman Tristram C. Colket, Jr., R. Anderson Pew Honorary Vice Chairmen Steven M. Altschuler, M.D. Chief Executive Officer Aminta Hawkins Breaux, Ph.D. Secretary Anthony A. Latini Treasurer Thomas J. Todorow Assistant Treasurer Jeffrey D. Kahn, Esq. General Counsel & Assistant Secretary Margaret M. Jones Assistant Secretary Board of Trustees N. Scott Adzick, M.D., M.M.M., Steven M. Altschuler, M.D., Clark Hooper Baruch, A. Lorris Betz, M.D., Ph.D., Fred N. Biesecker, Aminta Hawkins Breaux, Ph.D., Mortimer J. Buckley III, Stephen B. Burke, Dominic J. Caruso, Alan Cohen, M.D., Tristram C. Colket, Jr., Arthur Dantchik, Mark Denneen, Mark Fishman, Lynne L. Garbose, Esq., Anthony A. Latini, George B. Lemmon Jr., James L. McCabe, John Milligan, C.P.A., Asuka Nakahara, Jeffrey E. Perelman, R. Anderson Pew, Gerald D. Quill, David B. Rubenstein, Anne Faulkner Schoemaker, Salem D. Shuchman, Binney Wietlisbach, Nancy Wolfson, Dirk E. Ziff Ex-Officio Tami Benton, M.D., David Cohen, M.D., Jeffrey A. Fine, Psy.D., Jeffrey Golden, M.D., Kathleen Chavanu Gorman, M.S.N., R.N., William J. Greeley, M.D., M.B.A., Diego Jaramillo, M.D., M.P.H.

Children are at the core of everything we do at CHOP. Every year, more than a million children pass through our doors, and each one has a unique story. Throughout my 29 years at CHOP, the bravery, determination and heart in our young patients has never ceased to amaze me.

In this issue of Children’s View, many of our patients share with you their lifechanging CHOP experiences. You’ll meet children battling cancer (Page 10), go behind the scenes of a liver transplant (Page 16), and hear from a mother whose determination to better her daughter’s life led to the creation of the nation’s best trisomy 21 program (Page 20).

Children are not the only stars at CHOP — especially since the Ryan Seacrest Foundation brought THE VOICE to the Hospital. After a kickoff visit from Ryan and singer/actress Selena Gomez (Page 4), a cavalcade of celebrities has visited our multimedia broadcast studio, bringing countless smiles to our patients.

Of course, many of CHOP’s brightest stars work behind the scenes. Stephen B. Burke recently completed his three-year term as chairman of our Board of Trustees.

Steve has been a visionary leader and a champion for children’s health, and we all thank him for his service, which he continues as a member of our Board. Our new chairman, Mortimer J. Buckley III, began in September and no doubt will make his own distinguished mark on CHOP. From clinical staff to philanthropic donors to celebrity visitors, we all have a role to play in creating healthier, happier lives for children. Thanks to your efforts, we have so many inspiring stories to tell about the lives saved and improved here.

Emeritus Leonard Abramson, Willard Boothby, Ruth M. Colket, Armin C. Frank, Peter C. Morse, George Reath Jr., Stuart T. Saunders Jr., Esq., Richard D. Wood Jr.

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

Children’s View Steven M. Altschuler, M.D. Chief Executive Officer Stuart P. Sullivan Executive Vice President and Chief Development Officer Mark Turbiville Assistant Vice President Julie Sloane Editor Kim Caulfield Director, Development Communications

Nicole Keane Associate Director Eugene Myers Development Writer Stephanie Hogarth Chief Marketing Officer Linda Lightner Creative Director Zan Hale Managing Editor Jennifer Linden Art Director

Sara Barton, Abny Santicola, Jessa Stephens Senior Writers Sandra Gravinese Production Manager Ed Cunicelli Principal Photography Paul Crane Additional Photography

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

Comments and inquiries should be addressed to: The Children’s Hospital of Philadelphia Foundation 34th Street and Civic Center Boulevard Philadelphia, PA 19104-4399 giving@email.chop.edu For information about making a contribution to support CHOP, call 267-426-6500 or visit Giftof Childhood.org.

Contents Fall 2011

10 Cover Story Faces of Cancer Hope for Shayla Kids with neuroblastoma find the world’s experts at CHOP. Targeting Tumors Proton therapy offers less damaging radiation for kids.

Beating the Odds CHOP offers specialized care to survivors like Alex (right).

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The View from Here

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Today@CHOP

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Family Focus Transplant Center

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Patient Story Sickle Cell Center

Go behind the scenes of a liver transplant for 9-month-old Carter.

20

Giving Back Trisomy 21 Program

10 Tahirah, 25, transitioned from CHOP patient to CHOP researcher.

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Volunteers in Philanthropy

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Upcoming Events October 2011 – January 2012

On the cover: Shayla, 6, neuroblastoma

20 Jenna, 12, and her mom, Lizanne, helped start CHOP’s Trisomy 21 Program.

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Today@CHOP VIEW News

Giving Kids a VOICE Ryan Seacrest’s new broadcast studio opens at CHOP with great fanfare — and Selena Gomez With hundreds in attendance at the July 15 dedication of THE VOICE@CHOP, a multimedia broadcast studio built in the Colket Atrium of Children’s Hospital by the Ryan Seacrest Foundation, there was plenty of noise. But the best moment was a quieter one.

Once the speeches were over and the ribbon was cut, Julia Parmisciano, a 13-year-old cardiac patient, played her guitar while teen superstar Selena Gomez sang her hit song “Who Says.”

It was up in the air whether Julia would muster the courage to play in front of her favorite star. Ryan Seacrest visited her room the day before to help her get over her nervousness. “I’m so glad I did it,” Julia says, beaming.

It took courage to play, yes. But Julia shows even more courage every day as she waits for a new heart. It is that positive attitude that led Seacrest to bring THE VOICE to CHOP. “The courage of these kids, the fearlessness — that’s why I wanted to do this,” he says. “I wanted to do something tangible to lift the spirits of the kids.”

After building the first in his hometown of Atlanta, Seacrest selected CHOP for the second THE VOICE studio. With the Ryan Seacrest Foundation, Comcast helped make it a reality. Radio and TV shows created in the state-of-the-art studio will be fed through

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“The courage of these kids, the fearlessness — that’s why I wanted to do this,” Seacrest says. a closed-circuit connection to every inpatient room. Patients can act as DJs and play their favorite songs, or interview celebrities who visit CHOP for broadcast throughout the Hospital.

In fact, in the first month after opening, THE VOICE hosted celebrity visits from Miranda Cosgrove, Greyson Chance, Keri Hilson and Cee Lo Green, who led patients in an impromptu singalong of his hit song “Forget You.” After the inaugural broadcast, Seacrest and Gomez signed autographs for the many patients who had come to the Colket Atrium for the dedication. They also visited patient rooms for one-on-one time with children who couldn’t attend the event.

Kelli Ruth, 9, is a huge American Idol fan and was thrilled when Seacrest posed for photos with her and signed the pillow propping up her left leg. “I love that show, and he’s so nice,” she gushes. Kelli had surgery to remove a cancerous tumor and faces more treatment. Her mother, Sydney, wiped away a tear. “That’s the only thing that has made her smile today,” she says. Q Left page: (counterclockwise from top) Ryan Seacrest testing out the new studio; the Seacrest family; Selena Gomez singing with Julia Parmisciano and visting patients. This page: Gomez and Seacrest interacting with patients throughout CHOP. Read more and view videos at giftofchildhood.org/thevoice.

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Today@CHOP VIEW News

Braman Family Establishes Center for GI Motility It’s one of those everyday things most people take for granted: We eat our favorite foods, then a complex series of muscles, nerves and hormones move that food through our digestive tract. We don’t think, “Cue the small intestine! Absorb nutrients!” It simply happens.

But for children with gastrointestinal (GI) motility disorders, it doesn’t. This group of disorders is tricky: The child’s esophagus, stomach or intestines don’t function normally, but the cause can be hard to pinpoint, making diagnosis and treatment difficult.

Eating and digesting often become uncomfortable, even painful, and malnourishment is a risk. Many of these children don’t show outward symptoms of their conditions, but the stress and embarrassment they experience is significant.

In an effort to make headway against these disorders, Irma and Norman Braman and the Braman Family Foundation recently gave a transformative $5 million gift to establish the Suzi and Scott Lustgarten Center for GI Motility. This world-class center of excellence will offer cutting-edge diagnostic resources and comprehensive patient care, including psychological services for children with motility disorders.

“The Bramans and Lustgartens have been such strong supporters of CHOP over the years, and this Center will give hope to so many families living with these difficult disorders,” says CHOP CEO Steven Altschuler, M.D. “The discoveries and treatment protocols developed at the Center will help kids across the country and around the world.”

“GI research is severely undervalued and underfunded.

We want to help families through this painful journey and offer children everywhere happier childhoods and healthier futures.”

– Norman Braman

This new center is named for the Bramans’ daughter Suzi Braman Lustgarten and her husband, Scott, who also have shown a passionate commitment to Children’s Hospital and the fight against GI disorders. Scott Lustgarten is president of the Auto Dealers CARing for Kids Foundation, which each year hosts the Philadelphia International Auto Show Black Tie Tailgate Preview Gala to benefit CHOP. The beneficiary of next year’s event, on Jan. 27, is the Division of Gastroenterology, Hepatology and Nutrition at CHOP, which collaborates closely with the Center and other divisions at the Hospital to offer comprehensive, multidisciplinary care for GI motility patients.

The Braman family’s gift will also fund two endowed chairs: the Irma and Norman Braman Endowed Chair for Research in GI Motility Disorders and the Suzi and Scott Lustgarten Endowed Chair for Clinical Care of GI Motility Disorders. Endowed chairs provide funding for research in perpetuity and help attract and retain superstar physicians.

“GI research is severely undervalued and underfunded,” says Norman Braman. “We want to help families through this painful journey and offer children everywhere happier childhoods and healthier futures.” Q Norman Braman (left) and his family. From left: daughter Debra Wechsler, granddaughter Sarah Lustgarten, daughter Suzi Lustgarten, wife Irma Braman and son-in-law Scott Lustgarten.

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Celebrating Our Donors If you’ve walked in the main entrance to CHOP recently, a new addition may have caught your eye: a dynamic, colorful new donor wall to celebrate thousands of CHOP’s generous supporters. The installation’s wall of shifting colors illuminates the names of Chairman’s Circle members — those whose lifetime giving to the Hospital totals $1 million or more — and three interactive touch screens allow visitors to view the names of donors who have given at least $1,000 in the previous fiscal year. The screens also display multimedia stories highlighting dozens of CHOP’s inspiring patients and donors. Want to see your name in lights? You can swipe your credit card to make a donation on the spot. Last year, donors to the Hospital gave more than $80 million, enabling the exceptional pediatric care, research and family services that improve the lives of hundreds of thousands of children. QQ

Kids in the Hall

An illuminated feature honors Chairman’s Circle members.

Three Wishes

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

“If a genie gave you three wishes, what would they be?”

Francesca, 7, Neurology “I want to ride on a flying pony, walk on the ceiling and do whatever I want.”

Gabriel, 9, Endocrinology “I want to live forever, to be able to shape-shift and to fly.”

Rebecca, 8, Cardiology “I’d like 100 horses, and I want to meet Scooby-Doo and hang out with the Scooby-Doo gang.”

Ryan, 15, Oncology “I wish I could play the amount of sports I used to, I wish I was done treatment, and I’d like to learn how to surf.”

Rheana, 5, Surgery “I want to go to the playroom every day, get visits from my family every day and receive cards from my family. And I wish my mom would give me ginger ale.” [Rheana asked for four wishes — we couldn’t say no!]

Jay, 12, Oncology “I’d have the biggest party and go on a cruise. And I want to make as many people smile as possible.”

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Today@CHOP VIEW News

Quiz

CHOP Chow

From patients and their families to staff and visitors, each year tens of thousands of people eat meals at CHOP, and they are a hungry bunch. Can you guess the right answers to these food-related questions?

?

?

??

?

3 … apples and oranges Last year, to inpatient rooms? a) 21,000 CHOP served b) 37,000 how many… c) 52,000 1… gallons of milk?

4… 7-inch pizzas? a) 39,000 b) 67,000 c) 102,000

a) 17,000 b) 22,000 c) 39,000

2 … chicken fingers?

5… pounds of broccoli?

a) 54,000 b) 76,000 c) 103,000

a) 2,200 b) 3,600 c) 5,400 Answers: 1) b, 2) c, 3) b, 4) a, 5) c

Robin Cook, M.S., R.D. My CHOP

HERO

Job title: Pediatric Surgical and Trauma Dietitian Years at CHOP: 5 Robin is one of CHOP’s 50+ dietitians and one of two dedicated to surgery patients. She helps kids gain weight before and after surgery and get the right nutrients so they can grow, develop and better recover from procedures.

“Our little warrior, Wyatt, has been a challenge since the day he was released from the Lassin N/IICU. Between reflux, vomiting and other feeding issues, it’s not easy for him to gain weight. Through two years and many surgeries, Robin always has one more trick up her sleeve to get calories into his body: manipulating the time of his feeds to make him hungry, feeding him through his tube while he’s napping, even offering him unlimited ice cream. As she says, it’s like Weight Watchers in reverse — anything to get him to gain weight! Wyatt and his sister are always excited to see Robin, and how many kids do you know who get excited to see a dietitian? That’s how important she has become to us. I don’t know what we would have done without Robin’s help.”

– Carrie Forte, mother of Wyatt, 2, who was born with congenital diaphragmatic hernia

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

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Children’s View

Ask Dr. Bell

Concussions

Head Rest

By Louis Bell, M.D. With fall sports under way, this time of year always brings questions about concussion.

Concussion is a brain injury caused by a blow to the head or the body. Headache is the most common symptom, along with nausea, sensitivity to light and sound, fatigue, a sense of “fogginess” and dizziness. The symptoms may not be so bad the first day, but can get worse the second and third.

Sometimes parents expect a doctor to order a CT scan immediately after a head injury, but that’s not always needed. A concussion is a functional injury, not a structural one; there’s nothing to “see.” Imaging tests simply rule out a more serious injury like a skull fracture or bleeding around the brain.

I spoke with Tina Master, M.D., and Matt Grady, M.D., experts on CHOP’s nonsurgical Sports Medicine team who study concussion and are on the front lines of treatment.

The first question they usually get is, “When can my child return to play?” They tell parents this: “Before we talk about sports, let’s talk about school.”

Usually kids’ bodies bounce back from injury faster than adults’, but with concussions it’s often the opposite.

Recently, researchers have discovered that “brain rest” — quite literally doing nothing — is critical for treating a concussion, and the first 24 to 72 hours are the most important.

Frankford High School football players at practice

Louis Bell, M.D., chief of the Division of General Pediatrics at CHOP, explains the latest in medical thinking on an important topic: concussions.

The brain needs all the energy it can get to recover from an injury. Asking it to learn American history or do math problems, or to exchange text messages and play video games, is likely to prolong the recovery time.

Once the child is symptom-free at rest, then we begin adding back cognitive activity gradually. To start, that might be 10 or 15 minutes on the computer or reading a book.

When the concussion symptoms return, it’s time to stop and rest again. Some kids start by going back to school for an hour a day and gradually work up to a full day. Definitely don’t rush back to sports: The worst thing you can do for a concussion is to get another one before the first one has healed.

Many schools now offer baseline testing for athletes in contact sports, just as the NFL and NHL do. Baseline testing, which CHOP offers at all of its Sports Medicine clinics, measures the brain under normal conditions. If the child does get a concussion, we can repeat the test to determine when he or she really is back to normal.

The reality is that while concussions happen in collision sports like hockey and football, they also happen in everyday life: in a bicycle or motor vehicle accident, falling out of a tree or down a flight of stairs. Even a blow to the body can indirectly create trauma to the head and cause a concussion.

Anytime a child gets hit in the head, take it seriously and consult your doctor. With rest and appropriate treatment, most kids with concussions make a full recovery. Q To read more of Dr. Bell’s columns, or to suggest a topic for a future column, please visit giftofchildhood.org/childrensview.

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of cancer E

very year, 11,000 children and adolescents in the United States will be diagnosed with cancer. CHOP’s Cancer Center, one of the most respected centers in the world, sees more than 800 patients a year and invests more than $62 million annually into

pediatric cancer research.

In the coming pages, you will read about three of Gary, 17 Taylor, Pa.

its patients — Shayla, Hanna and Alex — who

Likes hockey, baseball and soccer. Wants to be a civil engineer or high school math teacher.

inspiring stories of battling cancer. You’ll also see

generously shared with us their personal and portraits of many other Cancer Center patients and read about their hobbies, interests and dreams. Giving all of our patients the chance to be fun, curious, normal kids and fulfill those dreams is what the Cancer Center at CHOP is all about.

Bria, 16 Woodbury, N.J. Enjoys visiting aquariums and amusement parks.

Dreams of being a graphic designer.

Krista, 17 Pittsgrove, N.J. Enjoys baseball, softball, Facebook and going to the beach. Wants to be a police officer.

Gavin, 10 Egg Harbor Township, N.J. Likes to camp at Big Timber Lake and eat crabs. Hopes to work at a pet shop.

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Hope for Shayla

By Jessa Stephens

W

ith a smile on her face, 6-year-old Shayla Garrett arrives at CHOP for her monthly chemotherapy treatment with her favorite doll, Jiquan, in her arms.

Shayla proudly shows off the contents of her colorful striped backpack, which she has packed with a few things the two will need today: some potato chips and a Barbie doll for her, a soft pink blanket and a plastic sippy cup for Jiquan.

“We’re just so grateful we have this,” says Shayla’s mom, Jennifer, glancing up at CHOP’s Main Building as her daughter plays in the grass nearby.

It’s a beautiful moment for a mother and daughter who, just a few months ago, thought they were about to lose everything.

Shayla has been fighting neuroblastoma, one of the most devastating childhood cancers, for more than three years. At a hospital in her home state of North Carolina, she endured harsh chemotherapy treatments, radiation and a bone marrow transplant. She suffered from severe nausea and diarrhea and received blood transfusions at least twice a week. “She was in the hospital all the time,” says her mom.

After those initial treatments, Shayla’s cancer was in remission for almost a year. But in November 2010, a routine CT scan showed that the cancer had returned. “It was a shock,” Jennifer says. “It was devastating.”

When Shayla’s parents brought her to CHOP to explore new treatment options, it seemed like time was running out for the usually energetic kindergartner. “She had a hard time walking,” her mom says. “She was in pain.”

Still, Yael Mossé, M.D., co-director of CHOP’s Neuroblastoma Developmental Therapeutics program, had hope for Shayla. And the next day, on the 640-mile drive home, Jennifer says, “I finally smiled a little bit.”

Shayla began an experimental treatment at CHOP in December. Six weeks later, her cancer was nearly gone.

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Right: Shayla and her favorite doll, Jiquan Children’s View

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Shayla is one of the many patients who have benefited from CHOP’s world-renowned neuroblastoma program, which focuses on translating lab discoveries into new treatments — and new hope — for patients.

“In the lab, we try to identify the molecular abnormalities that will allow us to be much smarter about how we find drugs to target those abnormalities,” says Mossé.

The team has celebrated many significant successes in just the past few years. In 2008, they discovered the gene that can cause neuroblastoma to occur — a finding that has already led to a clinical trial of a targeted therapy. And in the last few years, the team has further identified most of the genetic factors causing the disease. In 2010, they were part of a large research group that found that a type of immunotherapy improved two-year survival rates in patients with high-risk neuroblastoma by 20 percent — the first significant increase in neuroblastoma cure rates in more than

a decade. They also recently identified several proteins that are promising treatment targets for high-risk neuroblastoma, and they have made major inroads toward translating these findings into new drug treatments.

“We have developed a philosophy that relapsed neuroblastoma can be a chronic disease,” says John Maris, M.D., chief of the Division of Oncology and director of the Center for Childhood Cancer Research at CHOP. “Even though there is not a known cure for relapsed neuroblastoma at this point, there are ways to treat it that can get the disease under control and give the child an outstanding quality of life.”

The neuroblastoma team has already made an incredible difference in Shayla’s life. She, her mom and her older sister, Savannah, recently moved to New Jersey, in large part to be closer to CHOP. And although Shayla’s condition is still very serious, the frequent blood transfusions, debilitating side effects and long hospital stays are a thing of the past.

“She’s like a regular 6-year-old,” Jennifer says. “She’s able to go out and play, and go to concerts and go to school. She’s a rambunctious little girl, full of energy. And every day that I have her in my life, I have CHOP to thank.” Q

Patrick, 3 Bucks County, Pa. Wants to be a fireman and enjoys swimming, pizza and Snickers bars.

Victoria, 5 Denver, Pa. Likes to play dress up, dance, do gymnastics, go to church and eat animal crackers.

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Christine, 17 North Wales, Pa. Wants to be a pediatric surgeon.

Her favorite place to visit is Waikiki Beach.

Targeting Tumors

By Eugene Myers n a warm summer morning, 10-year-old Hanna McNinch should be doing laps in the pool, watching the Food Network or cooking up a storm — her favorite hobby. Instead, she’s at the Roberts Proton Therapy Center to receive radiation treatment for a brain tumor.

“It was Easter Sunday,” says Fran, Hanna’s mother, about the moment they knew something was wrong.

“We noticed her eyes were jumping up and down in her head.”

An emergency MRI revealed a large tumor around Hanna’s brainstem. Surgeons carefully performed a biopsy and gave her new reality a name: pilocytic astrocytoma.

The tumor increased pressure in Hanna’s brain, leading to nausea, vomiting and problems with her balance, coordination and vision. Surgery was only a stopgap; due to the tumor’s delicate location, it could only be partially removed. Radiation remained a good option, but Hanna’s doctors worried about damaging the healthy parts of her growing brain.

To minimize this risk, the doctors recommended a cutting-edge treatment: proton therapy.

Proton therapy targets the tumor with a thin beam of radiation, sparing as much healthy tissue as possible.

CHOP is one of only nine sites around the country to offer proton therapy and the only one specifically designed for children. The Roberts Proton Therapy Center, which opened in 2010, is the world’s largest, most advanced facility of its kind. It was named in recognition of a generous donation from the Roberts family: former CHOP Trustee Aileen Roberts and her husband, Brian, and his parents, Suzanne and Ralph Roberts.

An intensely bright and curious child whose favorite subject is science, Hanna patiently explains how her treatment works.

“You just basically lie down on a bed,” she says. “The machine rotates around you, but it’s not scary, it doesn’t touch you. It moves to get at your tumor from different angles, and it’s precise.”

Hanna will come to CHOP five days a week until she has had 30 outpatient sessions, a typical treatment cycle. Fran and her husband, Grant, take turns driving Hanna from their home in New Hope, Pa.

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Right: Hanna and her mom, Fran Above: Inside the proton therapy room Children’s View

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Sarah, 11 Hudsonville, Mich.

Enjoys swimming, science, pizza and pasta. Her hero is Dr. Maris.

Justin, 3 Philadelphia Likes visiting the Please Touch Museum, eating bananas and listening to music.

Hanna reports to the clinic for a quick checkup, then changes into a gown. Wherever Hanna goes, staff greet her cheerfully, compliment her white dress and ask about her cooking.

A radiation therapy technologist escorts her to a treatment room. The far wall is dominated by the gantry, the mechanism that maneuvers the proton beam around Hanna, while she lies perfectly still on a bed that is adjusted into position by computer. A therapist fits a plastic mesh mask over Hanna’s face so that her head is in the exact same spot for every session. Hanna even wears the same pink sneaker sandals on treatment days to maintain a consistent height.

Sheryl Crow’s “Real Gone” from Hanna’s mix CD fills the cavernous room; sometimes she hums along to her music during therapy.

Hanna’s neuro-oncologist, Angela Sievert, M.D., says that Hanna’s specific tumor type — associated with a genetic mutation first identified by Sievert and other CHOP researchers — generally responds well to proton therapy.

“Our goal is for a long-term cure with minimal side effects,” Sievert says.

While it will take at least a month to learn whether the treatment was effective, doctors are encouraged that Hanna’s symptoms haven’t worsened. In fact, her balance has improved enough that she doesn’t fall anymore — except when she trips over Max, their 6-year-old Westie who often manages to get underfoot.

Hanna sometimes gets nauseous — Fran always carries a small bucket and bottle of water, just in case — and her striking red hair is thinning in spots from the radiation. But Hanna sees a bright side even in that: She has heard that lost hair can return with different color or texture.

“She’s hoping for curly hair,” Fran says with a smile. Q

Beating the Odds

By Jessa Stephens Morgan, 13 Haddon Heights, N.J. Enjoys reading Harry Potter books, playing field hockey and eating baked ziti. Her hero is Betty White.

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he odds were squarely against Alex Potter. Diagnosed at age 10 with a type of cancer known as metastatic nasopharyngeal rhabdomyosarcoma, Alex faced a grim 10 to 15 percent chance of survival.

“The whole world started caving in,” he says. “It was scary.”

Life shifted from baseball and Cub Scouts to surgery, chemotherapy and radiation. With a determined will, a supportive family and maybe a touch of luck, Alex defied the odds: He beat cancer.

Now 24, Alex has the kind of life he and his family were

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Right: Alex in front of the Wood Center, where he attends the Survivorship Clinic once afraid to dream about. He’s a graduate of Saint Joseph’s University and has a job he loves in the healthcare field. To most people, that would be the triumphant end of the story.

But the radiation and chemotherapy treatments used to combat cancer inevitably damage healthy cells too. For many childhood cancer survivors like Alex, life after cancer presents a whole new series of challenges.

That’s where the Cancer Center’s pioneering Cancer Survivorship Program comes in. The first program of its kind in the nation, it has been caring for childhood cancer survivors for more than a quarter century, helping them through issues that can include heart abnormalities, learning difficulties, depression, post-traumatic stress and lung problems, among others.

When Alex was diagnosed with cancer, he already had tumors in his neck, spine and lung. The radiation that saved his life left his esophagus damaged, making it difficult for him to swallow food. He works with a nutritionist at the Cancer Center’s Multidisciplinary Cancer Survivorship Clinic to find foods he can eat. He also takes a handful of pills every day for heart and thyroid problems, and in addition to the Clinic’s nutritionist, he sees the Clinic’s cardiologist and endocrinologist. When he had his wisdom teeth removed in 2008, he had to spend 2 1/2 hours in an oxygen chamber every day for the 20 days before the surgery to strengthen his jaw bone.

Now, Alex comes to CHOP just once a year for follow-up with the Clinic’s team of subspecialists.

Before the Clinic opened in 2005, survivors like Alex typically juggled a series of visits with a whole array of subspecialists. But now, at the monthly Survivorship Clinic, the subspecialists come to them.

“Kids and families were missing days from school and from work, trying to coordinate their complex medical needs,” says Jill Ginsberg, M.D., director of the Cancer Survivorship Program. “With this clinic and the coordination of appointments and a dedicated group of subspecialists, the care has been so much more seamless.”

“It just makes it so much easier,” Alex agrees.

Alex remains resolute in his fight against cancer, participating in the Four Seasons Parkway Run and Walk, one of the Cancer Center’s signature fundraising events, held every autumn for the past decade. It’s a way to give back to the nurses and doctors at the Cancer Center, who are like family to him.

“They care so much,” he says. “Just knowing they’re there if I need something or have a question about something … it’s great peace of mind to know that you have that.” Q

“All In” for Kids Poker Tournament The Center for Childhood Cancer Research was the beneficiary of the 2011 “All In” for Kids Poker Tournament, which took place on Oct. 20 at the Mandarin Oriental in New York City.

Hosted by poker legend Phil Hellmuth, the tournament brings together celebrities, athletes and professional poker players with Hospital Trustees, donors and grateful families. The Kortney Rose Foundation, which helps support the search for genetic causes of pediatric brain tumors, was the presenting sponsor. Q

“ Po All In ker ” To for K urn id am s ent

For more information on the “All In” for Kids Poker Tournament, please visit giftofchildhood.org/allinforkids.

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Family Focus Transplant Center

A New Life for Carter The emotional journey behind the scenes of a liver transplant

By Julie Sloane Above: Carter and his mother, Lara, six weeks after surgery

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t is 10 p.m. In the Pediatric Intensive Care Unit (PICU), Lara Weems stands in a darkened room, rocking her 9-month-old son, Carter, in her arms. She sings, coos and all but begs him to get some rest. Her husband, Aaron, circles the room. It has been 10 hours of waiting with a singular focus: Is the liver good?

Carter was born with ornithine transcarbamylase (OTC) deficiency, a rare metabolic disorder in which the liver can’t rid the body of ammonia. Just a few hours of ammonia buildup can cause permanent brain damage in a newborn, even send him into a coma. The littlest thing can trigger an ammonia spike: any illness, too much food, too little food, missed medication, throwing up his food or medication. Carter has spent five of his first nine months at CHOP and must be fed and medicated every three hours around the clock. To avoid germs that might make Carter sick, the family has become virtual shut-ins.

“We have just gotten to know this sweet baby, and it’s an ever-present looming stress that if we make one wrong move, we might lose him,” says Lara.

For Carter to survive without serious brain damage — perhaps even to survive at all — he needs a liver transplant; with it, he would be cured.

The Fred and Suzanne Biesecker Center for Pediatric Liver Disease, established 10 years ago thanks to a gift from the Biesecker family, has made CHOP one of the best places in the world for kids like Carter.

After two months on the transplant list and one false alarm — the family spent all night at CHOP only to learn that the donor liver wasn’t suitable — a potentially compatible liver from a deceased child has become available. It would make Carter one

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of about 15 children who receive a new liver at CHOP each year.

Behind the scenes, Kate Anderer, Carter’s transplant coordinator at CHOP, thinks it’s looking good. She has been on the phone all day with the organ procurement organization, relaying information between the teams and parents, and waiting to find out exactly when the donor surgery will take place.

Around midnight, with two CHOP surgeons in the operating room (OR) at the donor’s hospital to collect the new liver, Anderer gives the green light for Carter to relocate from the PICU to CHOP’s OR complex. He is the only patient in the OR that night. For an event this momentous, it is a long, quiet wait.

At 1 a.m., the OR nurse walks in with a cordless phone.

“The transplant coordinator wants to talk to you,” she says.

Lara signals her husband to take the phone. She’s sure it’s bad news and doesn’t want to hear it.

“It’s good?” Aaron says into the phone. “That’s great news.”

Lara’s jaw drops in astonishment. She closes her eyes as they well up with tears and bends over her son, who is asleep in his crib. Both parents kiss Carter and whisper goodbye as the nurse wheels him into the OR. “I promise I’ll take good care of him,” says the nurse as the parents head to the empty family waiting room, thrilled but slightly numb with disbelief.

At 2:29 a.m., surgeon Kim Olthoff, M.D., begins the process of removing Carter’s liver. Minutes later, another surgeon walks briskly into the OR carrying a cardboard box bearing bright orange and green stickers: “Human Organ/ Tissue for Transplant.” She unpacks the new organ from layers of ice and protective fluid and, with the other lead surgeon, Abraham Shaked, M.D., Ph.D., begins preparing it for Carter.

The surgeons work with a calm intensity. The tiny blood vessels of a 9-month-old make for complicated microsurgery, but Olthoff and Shaked are among the most experienced transplant surgeons in the country. Between the surgeons, nurses and anesthesiologists, there are as many as 10 people

For Carter to survive without serious brain damage — perhaps even to survive at all — he needs a liver transplant; with it, he would be cured.

Above (from left): Carter sleeps as he awaits surgery; the box containing his new liver; surgeons attach the new organ.

in the OR. The nurses record every detail, counting every gauze pad and instrument, ensuring that nothing is left in Carter’s abdomen.

At 4 a.m., Carter’s old liver is out and another doctor arrives to collect samples of it for routine testing and research.

Meanwhile, the new liver is placed into Carter’s abdomen and attached to his vessels and ducts.

At 7:15 a.m., Olthoff enters the waiting room. Aaron is napping in a chair, his wife curled up with hospital blankets on the floor. They awaken, rumpled and bleary-eyed but anxious to hear the news. “The liver looks good,” Olthoff tells them. “It was a perfect fit, like it was meant to be his.”

Lara throws her arms around the doctor, who looks slightly shocked — she has been on her feet operating all night.

Time will tell how the early ammonia exposure will affect Carter in the long run, but two months after the transplant, his liver is functioning well and even the long frown of a scar across his abdomen has healed.

“Carter seems like a different kid,” says Aaron. “Now that he’s not in constant discomfort, he has the chance to calmly and independently explore the world. In some ways it’s like starting over as a newborn. It’s a whole new phase of his life.” Q View more photos taken throughout the evening of Carter’s transplant at giftofchildhood.org/childrensview.

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Patient Story Sickle Cell Center

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Rising Above Sickle Cell

A former CHOP patient joins the fight against her disease.

By Julie Sloane Above: Austin, 25, works on sickle cell research

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hen Tahirah Austin puts on her Children’s Hospital employee badge every morning, she feels lucky: At 25, she already has her dream job.

A graduate of Neumann University with a degree in biology, Austin works for CHOP’s Research Institute, where she helps guide patient families through research studies on sickle cell disease.

She has long had a love of science, but there’s a personal reason Austin is so invested in helping CHOP’s sickle cell patients: For 17 years, she was one.

Even though sickle cell disease is one of the most common inherited genetic disorders, affecting more than 100,000 in the United States, most Americans know little about it.

It is most common in African-Americans — affecting 1 in 375 babies — but is also found in people of many ethnic backgrounds.

A disease of the red blood cells, it causes normally pillowy, round cells to become stiff and sickle-shaped. These sickle cells tend to clog small blood vessels, leading to sudden episodes of debilitating pain. Over time, they also damage organs and can lead to frequent infections and strokes.

While today mandatory newborn screening detects the disease at birth, Austin was born in 1986 at a hospital that had not yet started testing. It wasn’t until Austin collapsed in her kindergarten gym class at the age of 6 that Kim Smith-Whitley, M.D., director of the Sickle Cell Clinical Program at CHOP, diagnosed her. Smith-Whitley remained her hematologist until Austin transitioned to adult care at age 23.

Austin has been hospitalized more times than she can count — and unfortunately that makes her typical of people with sickle cell disease. She spent the whole of her fourth grade year out of school, with three months as an inpatient at CHOP having her spleen, gall bladder and appendix removed. Every winter she has been hospitalized at least once for acute chest syndrome, a type of pneumonia caused by sickle cells getting caught in the

lungs. When she was 11, she had a heart attack followed by silent strokes, but luckily she survived without permanent damage.

Children with sickle cell often need to be hospitalized just to manage the severe pain. CHOP’s Sickle Cell Center, which cares for more than 1,000 families, created the Hematology Acute Care Unit so that kids with sickle cell crises could bypass the Emergency Department.

“Picture someone hitting you with a bat or stabbing you with a knife without stopping,” says Austin. “The pain is constant and sharp, and sometimes it’s so bad you can’t even walk. It can be anywhere — stomach, back, arms, legs, hips.”

Austin, with her father, at high school graduation

“She would always give me a big smile when I walked into her room, even though I’d read her chart and knew she was in an incredible amount of pain. She’s the epitome of a positive person, and that’s very motivational to younger kids who are going through the same thing.”

– Charles Adams, M.S.W., Sickle Cell Center

Ironically, despite enduring so many health problems, kids with sickle cell disease don’t “look sick,” making friends, teachers and employers less than understanding about frequent absences.

“The questions are constant,” says Austin. “Why weren’t you in school for two weeks? Why do you have to leave early to go to the hospital? For a child, it’s such a burden. You’re in a child’s body but you’re trying to think like an adult.”

“I remember her as a teenager in the Hospital,” says Charles Adams, M.S.W., a social worker in the Sickle Cell Center. “She would always give me a big smile when I walked into her room, even though I’d read her chart and knew she was in an incredible amount of pain. She’s the epitome of a positive

person, and that’s very motivational to younger kids who are going through the same thing.”

Although Austin works on many of the research projects at CHOP aiming to give kids and adults with sickle cell disease longer and fuller lives, she knows the disease does shorten one’s life span. Some of her friends have passed away.

At work and at home, she is an advocate for people living with sickle cell disease. Austin was the patient speaker at September’s Blue Tag Gala, CHOP’s fundraiser to benefit the Sickle Cell Center. This year she met with members of Congress in Washington, D.C., as part of a national Sickle Cell Advocacy Day. In the summer, she is a director at Dragonfly Forest, a camp that gives kids with sickle cell and other chronic diseases a medically supervised place to just be kids. The majority of campers are also CHOP patients. She credits a similar camp for giving her the confidence and leadership skills to be where she is today.

On top of her full-time job, Austin spends hundreds of hours each year volunteering for the camp. Even if a pain crisis strikes, she makes no excuses.

“People with this disease often work 10 times harder than everyone else so sickle cell won’t be to blame [for any failures],” she says. “I don’t want anyone to say, ‘She couldn’t do that because she has sickle cell.’ I absolutely can.” Q For images of the 2011 Blue Tag Gala, please go to giftofchildhood.org/childrensview.

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Giving Back

Trisomy 21 Program

Celebrating My Buddy A daughter’s life with Down syndrome

By Lizanne Magarity Pando Above: Lizanne and Jenna at Jenna’s fifth-grade graduation

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ur daughter, Jenna, was born four weeks early and immediately rushed into surgery. She had been diagnosed in utero with an intestinal problem common among children with Down syndrome (also known as trisomy 21) but possible in other kids as well. Doctors were reassured that she didn’t have any of the other telltale signs.

When they laid her in my arms, I knew she did indeed have Down syndrome. I got to hold her for only 30 seconds before they whisked her off to the surgical team waiting for her at CHOP. It was a horrible, difficult time, but the surgery was successful.

Having a disability is not what you want for your child — you want the world to be perfect for her. We had to grieve the loss of those expectations but also come to love the wonderful child that we got.

The list of possible medical problems for a child with trisomy 21 is shockingly long. People think of the cognitive delays and a certain physical clumsiness or awkwardness, but most don’t have a clue how complicated the condition’s medical problems are.

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“I am so thankful for the thousands of people every year who participate in the Buddy Walk and donate to the Program, which literally would not exist without them.

When we band together, we can make such a difference.”

Team Jenna at the 2007 Buddy Walk® & Family Fun Day

Thankfully, Jenna doesn’t have heart problems, which many children with Down syndrome do, but over the years she has had many other issues: gastrointestinal problems, seizures, dental issues, delayed walking and hearing loss. At 10 weeks, Jenna had a virus called RSV and had to be on a respirator for 14 days. She went into heart failure twice.

I learned one particularly scary fact: Most, if not all, children with Down syndrome develop Alzheimer’s disease by their 50s — and few researchers were studying the problem in a serious way. Grace Wadell, another mother of a child with Down syndrome, and I approached Dr. David Lynch, who studies neurodegenerative diseases at CHOP. We essentially said to him, “If we help bring you the funding, would you look into this?” He accepted. That was the beginning of the Trisomy 21 Program at CHOP. To raise funds, Grace and I started the CHOP Buddy Walk® & Family Fun Day at Villanova University, which has grown to become a 4,000-participant carnival-like celebration with crafts, moon bounces, face painting, performers and food. Now in its 10th year, the Buddy Walk has raised more than $2 million for the Trisomy 21 Program at CHOP. Our first check hired Dr. Mary Pipan, a developmental pediatrician, and Kim Schadt, the program coordinator and a nurse practitioner. With Dr. Lynch, they have put together the best program of its kind in the country.

Jenna was the first patient at the Trisomy 21 Clinic, in 2003. As part of her evaluation, Dr. Pipan asked me my concerns. Jenna had been learning words, but then losing them. We had already been to numerous specialists who said, “That’s just Down syndrome.” She wasn’t jumping.

She wasn’t potty trained. She was waking up in the middle of the night crying. We couldn’t find an effective way to discipline her.

Dr. Pipan wrote it all down, and then after a twohour evaluation of Jenna, astonished me with her insights: Jenna had a disorder called speech apraxia. Once a therapist addressed it in the right way, she learned to talk over time.

Dr. Pipan handed me books on how to potty train children with special needs and it worked. She diagnosed Jenna with night terrors, which we could then treat. She explained that Jenna didn’t understand negatives in a sentence, so “Don’t eat that” sounded like “Eat that.” We found new ways to speak to her. A physical therapist helped Jenna learn to jump.

I walked out of that appointment sobbing. I couldn’t have imagined Dr. Pipan would be that much help, and I can’t imagine where Jenna would be today without her.

Jenna is now a funny, personable 12-year-old middle schooler. She takes dance class, plays field hockey, cheerleads, swims at camp, keeps up with her friends and plays a mean game of tag. While she is behind grade level in reading and math, she goes to school with the general population and she has friends of all ability levels. She’s getting the social education she’ll need to go to college, live on her own and get a job — and she will do all of those things.

Jenna is lucky to have a dream team of specialists in a dozen different divisions at CHOP, and the Trisomy 21 Program makes sure all of that care is coordinated. I am so thankful for the thousands of people every year who participate in the Buddy Walk and donate to the Program, which literally would not exist without them. When we band together, we can make such a difference. Q For information on this year’s Buddy Walk, go to giftofchildhood.org/buddywalk.

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V.I.P. Volunteers in Philanthropy 1| “Our Kids” Golf Outing On July 11, GIANT Food Stores hosted its 15th annual “Our Kids” golf outing with more than 1,800 golfers playing on 13 golf courses in Pennsylvania. This year the event raised a record-breaking $850,000 for Children’s Hospital.

2| Hyundai Hope On Wheels Patients helped CHOP celebrate a $100,000 grant from Philadelphia Hyundai Dealers and Hyundai Hope on Wheels in support of pediatric cancer research. The Hope on Wheels Tour is a united effort of more than 800 Hyundai Motor America dealers across the country to raise awareness of childhood cancer and celebrate children battling the disease. For the second consecutive year, the Hyundai Scholar Grant was awarded to CHOP fellows Vandana Batra, M.D., and Lisa Wray, M.D. 3| Clays for Kids On May 13, Jeffrey and Nora Nazzaro hosted Clays for Kids to raise funds for the Center for Fetal Diagnosis and Treatment. Participants enjoyed an afternoon of shooting sporting clays at the 3,600-acre Hudson Farm in Andover, N.J., followed by a cocktail reception and auction. This first-time event raised more than $100,000.

Blue Tag Gala & Silent Auction On Sept. 10, the Community Advocacy Committee hosted the 2011 Blue Tag Gala & Silent Auction at the Hyatt at The Bellevue. Two hundred guests attended the event, raising more than $115,000 to benefit the Sickle Cell Center at CHOP. The keynote speaker was Alan Flake, M.D., director of CHOP’s Center for Fetal Research, who is pursuing promising research to cure sickle cell disease before birth. Darlene Logan and Judith Royal were the co-chairs, and Tahirah Austin (see Page 18) shared her patient experience. Q

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4| Volunteer Leadership Summit On June 4, dedicated volunteers, Trustees and leaders from every area of the Hospital gathered for CHOP’s first-ever Volunteer Leadership Summit. The daylong event celebrated the contributions of CHOP’s many volunteers and featured presentations from CEO Steven Altschuler, M.D., and Douglas Canning, M.D., chief of the Division of Urology. Mortimer Buckley III, now Board chairman, presented the inaugural HOPE Award for Distinguished Volunteer Service to Trustee Jeffrey Perelman, for his nearly 20 years of leadership and dedication to the Hospital.

5| Philly Financial Day On July 8, financial services institutions in the Philadelphia area donated a significant portion of the day’s trading commissions and transactional revenues to charities founded by Phillies stars (pictured from left) Shane Victorino, Cole Hamels, Jimmy Rollins and Chase Utley. CHOP received $25,000 as one of the day’s beneficiaries.

6| CHOP Golf Classic On May 9, the Lynn Saligman League hosted the annual CHOP Golf Classic at Huntingdon Valley Country Club. The tournament raised more than $200,000 to support a variety of CHOP programs, such as the Garbose Family Special Delivery Unit and Camp Get-AWell-A. Turner Construction returned as the presenting sponsor.

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V.I.P. Volunteers in Philanthropy

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8 7 | Philadelphia Insurance Triathlon The seventh annual Philadelphia Insurance Triathlon was held on June 25 and 26 in Fairmount Park. It raised more than $95,000 for CHOP’s Cancer Center through the Karr Barth Charity Challenge (pictured) and corporate initiatives at Philadelphia Insurance Companies and ESCO-Zodiac Aerospace.

8 | Canuso Foundation Gift to CHOP The Canuso Foundation recently presented the second of two $50,000 gifts to the Center for Childhood Cancer Research (CCCR). On hand to accept the award from the Canuso family was 2010 research awardee Alix Seif, M.D., along with John Maris, M.D., chief of the Division of Oncology and director of the CCCR, and Stephan Grupp, M.D., Ph.D., director of translational research for the CCCR. 9 | Soupy for Loopy Foundation Check Presentation The Soupy for Loopy Foundation recently donated $50,000 to the Cancer Center for research on targeting neuroblastoma cells without affecting healthy tissue. The Foundation was established in 2007 in memory of neuroblastoma patient Laura Sypek, who was affectionately called “Loopy” by her family.

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13 10 | So Kids Can Be Kids 5K In May, the Harris family hosted a 5K run/walk in West Chester, Pa. The unexpected rain did not dampen the wonderful turnout to the 5K and post-race celebration at Barnaby’s of America restaurant. The event raised $17,000 for the Center for Pediatric Eosinophilic Disorders.

11 | Kortney’s Challenge and Day at the Races On Sept. 5, The Kortney Rose Foundation held its annual Kortney’s Challenge and Day at the Races at Monmouth Park, which raised $12,000 for pediatric brain tumor research. The day included a two-mile run/walk, a picnic and horse races.

12 | Peyton’s Promise 5K Run/2K Walk In June, Peyton’s Promise held its third annual 5K Run/2K Walk in Sea Isle City, N.J., in honor of Peyton Laricks, followed by a party at the Carousel Beach Bar. The event raised nearly $35,000 for congenital diaphragmatic hernia research.

13 | Partnership for Cures Longest Day of Golf-Chicago On June 20 at the Bryn Mawr Country Club in Lincolnwood, Ill., 20 golfers played more than 1,400 holes of golf for 16 hours, raising more than $53,000 to fund research on rare pediatric blood and immune disorders.

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15 14 | Rickey Gadson Ninja to the Core Charity Ride In May, Rickey and Kiana Gadson hosted a motorcycle trip in which 100 participants rode from Philadelphia to Myrtle Beach, S.C. The journey took 17 hours and raised $10,000 for CHOP’s diabetes education programs.

15 | Lollipop Run On May 14, the Mazzola family hosted the Lollipop Run in support of Edward Doolin, M.D.’s soft tissue research. The day featured military vehicles, a moon bounce and lollipops galore — and raised more than $10,000.

16 | RE/MAX of Reading Lobster Bake RE/MAX of Reading hosted its annual Miracles in Maui Lobster Dinner and Auction at Fish Pond West in Reading, Pa., on July 23. More than 100 people attended and raised more than $9,000 for Children’s Hospital.

17 | Second Annual Casey Coyle Memorial Fund Golf Outing On May 13 at McCullough’s Emerald Golf Links, the Casey Coyle Memorial Fund raised $13,000 to benefit cystic fibrosis patients at the Hospital.

10th Annual 98.1 WOGL Loves Our Kids Radiothon On Sept. 9 and 10, the 10th annual 98.1 WOGL Loves Our Kids Radiothon broadcast stories of hope and courage, earning $483,000 for patient care programs at CHOP. Since 2001, this event has raised more than $4.7 million. Q

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Upcoming Events

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Great Clips Balloon Campaign s 10/1 – 31 s Children’s Miracle Network at CHOP Children’s Classic Golf Tournament s 10/12 s Seaview Golf Resort, Galloway, N.J. s Children’s Miracle Network at CHOP Food Lion Golf Tournament s 10/14 s Wild Quail Course, Dover, Del. s Children’s Miracle Network at CHOP

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Extra Life Gaming Marathon s 10/15 s Children’s Miracle Network at CHOP

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Credit Unions for Kids Balloon Campaign s 10/15 – 12/31 s Children’s Miracle Network at CHOP “All In” for Kids Poker Tournament s 10/20 s The Mandarin Oriental Hotel, New York City s Center for Childhood Cancer Research

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Walk for Hope s 10/23 s Veterans Park, Hamilton, N.J. s Inflammatory Bowel Disease (IBD) Center Community Clothes Charity s 10/27 – 29 s Village Hall, Eagle Village Shops, Wayne, Pa. s Sickle Cell Center Monte Carlo Night s 11/3 s Courtyard Philadelphia Downtown Marriott s Children’s Miracle Network at CHOP The Carousel Ball 2011 s 11/5 s Hyatt Regency at Penn’s Landing s Simulation and training programs Ace Hardware Snowman Campaign s 11/20 – 12/17 s Children’s Miracle Network at CHOP The Women’s Committee Holiday Boutique s 12/1 – 2 s Merion Cricket Club, Haverford, Pa. s Various patient programs Daisy Day Shopping Day s 12/8 s Blue Bell Country Club, Blue Bell, Pa. s Division of Neurosurgery Philadelphia International Auto Show Black Tie Tailgate Preview Gala s 1/27 s Pennsylvania Convention Center, Philadelphia s Division of Gastroenterology, Hepatology and Nutrition Volunteer Leadership Summit s 3/31 s Loews Hotel, Philadelphia For details on upcoming events, go to.

Planning a CHOP fundraiser?

Register your event with The Children’s Hospital of Philadelphia Foundation at GiftofChildhood.org or contact Michelle Kerr at communityfundraising@email.chop.edu or 267-426-6496. We can help you get started and make sure your event is listed on our website.

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16 | Dairy Queen Balloon Campaign Dairy Queen raised $50,000 for Children’s Miracle Network at CHOP in 2011 through Miracle Treat Day and its annual balloon campaign.

17 | KK’s 5K in Honor of Caleigh Hoban In August, the Hoban family hosted its sixth annual run/ walk in honor of Caleigh Hoban. The event raised $4,000 for eosinophilic esophagitis research.

18 | 34th Annual Corvette Raffle The County Corvette Association raffled off a new 2012 C6 Chevrolet Corvette Coupe on Aug. 5. The group donated $5,000 to benefit the Children’s Fund at CHOP. 19 | Pine Run Elementary School Pretzel Sales Fifth-grade students at Pine Run Elementary School raised more than $1,000 for Child Life in Oncology by selling pretzels during lunch and other school events.

20 | Double Header for Autism In July, the Philadelphia Police and Fire departments battled in an action-packed charity baseball game that raised $2,500 for the Center for Autism Research.

21 | Midsummer Night’s Dream The Lobato family, with help from the Riverside, Calif., community, hosted a night of dinner and live music that raised $2,300 for osteogenesis imperfecta research.

LET YOUR LEGACY BE THE GIFT OF CHILDHOOD

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Our care, our research, our teaching.

They all rely on gifts from Children’s Hospital supporters, now and in the future.

Many of the most important and enduring gifts to CHOP have been made through wills, retirement plans, life insurance or trusts.

Including us in your plans is one of the easiest ways to invest in the health and well-being of future generations of children, and it won’t affect your current cash flow. It also may help reduce taxes for loved ones.

If you have already made a planned gift to CHOP, thank you, and please let us know. We can help you designate your gift to a specific Hospital program, and we’ll invite you to join the Lewis Society, a select group of supporters who have included Children’s Hospital in their plans.

Visit us at www.giftofchildhood.org/plannedgiving to learn more, including information on increasing your retirement income through a gift annuity. Or contact Tom Yates, director of planned giving, at 267-426-6472 or yatestg@email.chop.edu.

Nadir, 5, Sickle Cell Center

G I F T of C HILDHOOD .org/plannedgiving

GiftofChildhood.org

Hope lives here.

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Randy, 10, Lung Transplant

Because our scientists make discoveries that save kids’ lives.

Because someone like you took a moment to give.

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Because our doctors successfully treat the worst childhood diseases.

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