Children’s Winter 2011
Also Inside Eagles Kicker David Akers
The Children’s Hospital of Philadelphia Foundation | GiftofChildhood.org
The View from Here
Steven M. Altschuler, M.D. Chief Executive Officer Stuart P. Sullivan Executive Vice President and Chief Development Officer Mark Turbiville Assistant Vice President Kim Caulfield Director, Development Communications Nicole Keane Associate Director Julie Sloane Senior Writer and Editor Rebecca Elias Contributing Writer Stephanie Hogarth Chief Marketing Officer Linda Lightner Creative Director Zan Hale Managing Editor Jennifer Linden, David McIntosh Art Directors Sara Barton, Abny Santicola, Jessa Stephens Senior Writers Sandra Gravinese Production Manager Ed Cunicelli Principal Photography Paul Crane Additional Photography
It may be a relative, a neighbor, a fellow student in your child’s preschool or classroom. With as many as one in 110 children — one in 70 boys — diagnosed with an autism spectrum disorder, nearly everyone knows a child who is affected by this challenging condition. The Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia is a world leader dedicated to finding the causes of autism and pioneering the most effective treatments. Our cover story, which begins on Page 10, tells of some of CAR’s exciting breakthrough discoveries. CHOP inpatients are thrilled when Philadelphia Eagles kicker David Akers makes one of his frequent visits to the Hospital. Akers has long been a supporter of Children’s Hospital — see how he makes a difference (Page 16). Inside, you’ll also learn more about our clinicians, our researchers and our donors — all of whom are essential in providing exceptional care for children today and tomorrow. Thank you so much for your continued support.
Children’s View is produced by The Children’s Hospital of Philadelphia Comments and inquiries should be addressed to: Editor, Children’s View The Children’s Hospital of Philadelphia 34th Street and Civic Center Boulevard Philadelphia, PA 19104-4399 email@example.com For information about making a contribution to support CHOP, call 267-426-6500 or visit GiftofChildhood.org.
The Children’s Hospital of Philadelphia Board of Trustees Officers Stephen B. Burke Chairman Tristram C. Colket, Jr., R. Anderson Pew, Mortimer J. Buckley III, Mark Fishman, Vice Chairmen Steven M. Altschuler, M.D., Chief Executive Officer Jeffrey E. Perelman, Secretary John Milligan, C.P.A., Treasurer Thomas J. Todorow, Assistant Treasurer Roosevelt Hairston, Esq., General Counsel and Assistant Secretary Margaret M. Jones, Assistant Secretary
Steven M. Altschuler, M.D. Chief Executive Officer P.S.: We’re pleased to present a fresh design for this issue of Children’s View. We hope you enjoy the new look. And if a story piques your interest, just follow the link to additional information online.
Board of Trustees
N. Scott Adzick, M.D., M.M.M., Steven M. Altschuler, M.D., Clark Hooper Baruch, 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, Stuart T. Saunders, Jr., Esq., Anne Faulkner Schoemaker, Salem D. Shuchman, Audrey C. Talley, Esq., Binney Wietlisbach, Nancy Wolfson, Dirk E. Ziff
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. Emeritus Leonard Abramson, Willard Boothby, Ruth M. Colket, Armin C. Frank, Peter C. Morse, George Reath, Jr., Richard D. Wood, Jr.
Contents winter 2011
10 Feature Story Outsmarting Autism CHOP’s Center for Autism Research leads the quest to uncover the causes and symptoms of autism and develop more effective treatments, providing support and hope to local families along the way.
2 The View from Here 4 – 9 View News 16 Donor Focus David Akers
18 Family Focus The Cardiac Center
Abby, 18 months, a patient at the Cardiac Center
20 Research Nanoparticles
First-of-its-kind Portrait Project Unveiled
22 Volunteers in Philanthropy 26 View Calendar January – June 2011
Cindy Christian, M.D., Helping More Kids
VIEW News Latest from CHOP
Generosity Meets Need:
A Perfect Match
What happens when a child has no place to turn? When parents struggle to meet their child’s most basic health needs? When childhood itself is threatened simply because of lack of access to healthcare? These difficult questions haunted Nicholas Karabots for most of his life. Last summer, together with his wife, Athena, Nick took a giant leap toward addressing these vital issues. Through the Karabots Foundation, they made a transformative gift of $7.5 million to The Children’s Hospital of Philadelphia to create a new pediatric primary care center in West Philadelphia. Nick Karabots’ own life unfolded out of the hardscrabble streets of New York, where he started as a shoe-shine boy, and rose to prominence in the printing and publishing industry. His conglomerate of companies includes the nation’s largest publisher of puzzle magazines. “I grew up in the South Bronx, and it could be very tough,” says Karabots, now of Fort Washington, Pa. “I was lucky to be able to make the most of a few opportunities. But I have never forgotten how many other kids there were who didn’t have the same chances in life.”
“In CHOP, we found a partner that could help us realize our passion, and that could give children the opportunity to get the help they need.” Thanks to a $7.5 million donation from Nicholas and Athena Karabots, CHOP will soon begin construction on a new Pediatric & Adolescent Care Center in West Philadelphia. The contribution is inspired by the couple’s desire to bring more high quality medical resources to children in underserved communities.
The Nicholas and Athena Karabots Pediatric & Adolescent Care Center, being built at Market and 48th streets, will be part of the CHOP Care Network and serve children and families who need care the most. The gift is a vivid illustration of the power of philanthropy. “Without their gift,” says CEO Steven M. Altschuler, M.D., “we simply wouldn’t be able to build this center.” Situated on a four-acre site in an almost 50,000-squarefoot facility, the center will feature plenty of parking, child-friendly exam rooms, radiology, X-ray, hearing and vision testing and will be able to handle more than 45,000 patient visits per year. CHOP’s primary care practices at 39th and Chestnut streets and 3550 Market St. will relocate to the new center. “My wife and I have always been passionate about doing something that would help children and families who are struggling,” says Nick. “In CHOP, we found a partner that could help us realize our passion, and that could give children the opportunity to get the help they need.” n
Special Trips for Special Babies For many who grow up in the Philadelphia area, they are special childhood memories: seeing the monkeys, lions and giraffes at the Philadelphia Zoo, or exploring the Alice in Wonderland world at the Please Touch Museum. They are experiences that expand a child’s world. “Research shows that enlarging a child’s universe is important to development,” says Hallam Hurt, M.D., director of the Special Babies Clinic (SBC), a follow-up program for high-risk and preterm infants treated at CHOP Newborn Care at the Hospital of the University of Pennsylvania. But for many SBC families, Hurt learned, such trips are prohibitively expensive. To make these experiences more accessible for SBC families, Hurt and her colleagues worked with Philadelphia Zoo President and CEO Vikram Dewan to give 163 children and family members a free day at the Zoo this past summer. Laura Foster, president and CEO of the Please Touch Museum, also helped arrange free Museum trips for 68 family members.
“The kids were just enthralled. And the families were so grateful.” – Hallam Hurt, M.D., director, Special Babies Clinic
Both organizations donated free admission and CHOP’s Office of Government Affairs, Community Relations and Advocacy helped cover other costs such as transportation and snacks. The trips were such a success that both the Museum and the Zoo have committed to hosting them again next summer. Admission will be free, but Hurt is seeking funding to cover the costs of other items that made the trips both possible and special. n Every child who attended one of the special trips received a free book, and every family posed for a photo that SBC staff mailed to them after the event. “We had so much fun,” says Hurt.
VIEW News Latest from CHOP
Christian Expands Her Role for At-risk Children As director of Safe Place: The Center for Child Protection and Health at CHOP, Cindy Christian, M.D., has provided hands-on care for individual children who’ve been abused and neglected. As the first medical director for the Philadelphia Department of Human Services (DHS), an additional role she took on in July, she will oversee improving the health of thousands of children under the protective care of DHS. “The work I do with the city is a natural extension of what I do at CHOP,” Christian says. “It comes from the recognition that we can impact the health of children substantially within the walls of the Hospital. But we can have an even bigger impact stepping out into the community and working with our colleagues who are responsible for the safety and well-being of at-risk children.” In her first few months at DHS, she has come to more fully appreciate the incredibly complex and often chaotic family situations children experience.
“Because of trauma, neglect or the enormous challenges these families face, the children often haven’t been to the doctor for healthcare,” Christian says. She is developing policies and systems to monitor and improve children’s health while they’re being cared for by DHS and is training social workers how to identify medical issues that may require intervention. “The city is responsible for the health and well-being of thousands of children under the legal guardianship of DHS,” says Christian, who holds The Children’s Hospital of Philadelphia Endowed Chair in the Prevention of Child Abuse and Neglect. “This is a great challenge and a great opportunity.” Safe Place is made possible by major support from Ed and Patsy Garno ˙˙ Wyss Foundation. and the Hansjorg If you would like to support Safe Place, contact the Development Department at 267-426-6500. n
For 25 years, Cindy Christian, M.D., has dedicated her practice at Children’s Hospital to helping children who’ve been injured through abuse and neglect. This summer, she broadened her reach by adding the responsibility for the health and well-being of thousands of children under the care of the Philadelphia Department of Human Services.
First-of-its-kind Portrait Project Unveiled Destiny is an adorable 11-year-old whose pretty brown eyes grow wide when she talks about the things she loves, like her new Chihuahua, the cartoon character SpongeBob SquarePants and math, her favorite subject in school. She is a budding artist and an all-star catcher on her softball team. But unlike most 11-year-olds, Destiny has a diagnosis of oculo-auriculo vertebral syndrome, a craniofacial condition that affects development of the eyes, ears and spine. She has undergone numerous ear reconstruction surgeries at Children’s Hospital, which she’s faced bravely, and she faces more in the future. Destiny is one of eight remarkable CHOP patients who participated in “Face to Face: The Craniofacial Program Portrait Project.” The project paired patients born with craniofacial conditions who have had facial reconstructive surgery with artists from Studio Incamminati, renowned portrait artist Nelson Shanks’ realist art school in Philadelphia, to measure the positive impact of having their portraits painted. Face to Face was created out of an initiative started by Craig Aronchick, M.D., a Philadelphia physician, inventor and philanthropist whose own life was affected by facial scars and injury resulting from a childhood car accident. In 2005, Aronchick approached CHOP about addressing the psychosocial needs of children in the Craniofacial Program. Through Aronchick’s generous donation and additional efforts to raise funds for the program, CHOP was able to hire Canice E. Crerand, Ph.D., a psychologist specializing in facial differences, and place more of an emphasis on this aspect of care. “For young people with craniofacial conditions, it can be hard for them and for others to look beyond their facial differences,” says Crerand. “Our hope is that this project will help us all to see their strength and beauty.”
Destiny, depicted in the portrait above and pictured at left with her Studio Incamminati artist Stephen Early, was one of eight CHOP craniofacial patients to participate in the Face to Face portrait project.
The project — funded by a grant from the Edwin and Fannie Gray Hall Center for Human Appearance at the University of Pennsylvania — is the first of its kind in the United States. Patients and artists met over multiple sittings and collaborated on the composition of the portraits, and patients received a framed print of their completed portrait to keep. For Destiny, the program was yet another test of her courage that she conquered. “I’m proud of me,” she says. “I don’t want to be anyone else. I’m brave enough to prove to other kids with problems that I’m strong and can do this.” The eight portraits were unveiled at an October event in the Ruth and Tristram Colket, Jr. Translational Research Building lobby, where they were displayed for a month. Crerand and the team hope to make the Portrait Project a permanent part of the Craniofacial Program and are currently looking for external funding to make that possible. To view all of the Face-to-Face portraits, please visit www.giftofchildhood.org/ChildrensView. n
VIEW News Latest from CHOP
Gift Supports International Adoptees When Cynthia Gouw and her husband, Doug Alexander, adopted their daughter from China, they turned to the International Adoption Health Program at Children’s Hospital for its medical expertise and emotional support. “Before they adopt, parents have a lot of anxiety about the medical records of their child,” Gouw says. “It’s hard to figure out what they say. Dr. Susan Friedman held our hands through the entire process. When she reviewed the records, she knew what to look for. It relieved a lot of our stress.” Friedman is an attending physician in the program and holds the Wawa Endowed Chair in International Adoption. Now a generous donation from Gouw and Alexander is enabling the program to expand its support services to Philadelphia-area families with children adopted from overseas. The gift will support play groups that offer families ongoing assistance as their children grow. Often these children may experience physical, developmental or emotional challenges connected to their lives before adoption, and the play groups help parents recognize and manage the issues. Held at the CHOP Pediatric & Adolescent Specialty Care Center in King of Prussia, Pa., the sessions also give the adoptees a chance to play with other kids like themselves. Lack of funding cut last year’s programming schedule to three events. Thanks to Gouw and Alexander’s gift, there are seven events scheduled this year. “There are not a lot of international adoption programs, so when I moved here from California, I was thrilled to find out CHOP had one,” says Gouw, a nationally recognized broadcast journalist, lawyer, actress and model. “The program and Dr. Friedman are a huge asset to families.” n
20% no special medical or developmental issues 60% mild to moderate medical or developmental issues 20% severe medical or developmental issues
Eighty percent of internationally adopted children have some level of medical or developmental special needs. Source: International Medicine News
Test, Educate, Prevent:
CHOP Fights HIV The statistics blaring from newspaper headlines are alarming: Half of all new HIV infections in the United States occur in people younger than the age of 25. Philadelphia’s HIV infection rate is nearly five times higher than the national rate And three out of four teens who have HIV don’t even know they’re infected. A team of health educators from Children’s Hospital’s Adolescent Initiative is working to change that. The educators offer free HIV testing and counseling to high-risk teens at locations throughout the City of Philadelphia and attend community events to raise awareness of HIV. In 2009, the educators, who are based at CHOP’s Adolescent Care Center, tested 1,083 adolescents and provided health education, prevention information or assessment services to 1,213. “This is about prevention at its finest,” says Kenneth Ginsburg, M.D., attending physician in the Craig-Dalsimer Division of Adolescent Medicine. “It’s about going to kids who have some level of anxiety that they might be exposed to HIV. That’s a peak moment and a peak opportunity to be able to intervene in their lives. With the proper education oriented toward changing behaviors, it really might make a difference. It might ultimately save their lives.” n
114 23 8
Infection Rate per 100,000 people
Source: AIDS Activities Coordinating Office, Philadelphia Department of Public Health, 2009 Report on HIV/AIDS Care and Prevention in the City of Philadelphia
CHOP Takes Lead in New Research Network
Double Your Gift
Neurodevelopmental disabilities such as attention-deficit/ hyperactivity disorder (ADHD), autism spectrum disorders and intellectual disability are highly challenging to families, educational systems and caregivers. To further the understanding of these conditions and help researchers develop more effective treatments, Children’s Hospital now serves as the coordinating center for the newly created Developmental-Behavioral Pediatrics Research Network. This group of 12 leading pediatric institutions will pool resources and patient data in order to better study a number of conditions. “Even a hospital as large as CHOP doesn’t have enough patients with one particular disorder to allow for some specific research studies,” says Nathan J. Blum, M.D., chair of the Network’s executive committee and the director of the Leadership Education in Neurodevelopmental Disabilities Program at CHOP. “Our goal is for the network to ultimately provide the answers so we can better treat our patients.” n
Prevalence of ADHD Diagnosis by State
Help prepare the pediatricians and pediatric specialists of tomorrow. Resident and fellow education is an essential part of CHOP’s mission. Yet trainees are only partially funded by government monies, and the time senior physicians spend mentoring trainees is now often unpaid. Your donation closes the funding gap. The Department of Pediatrics’ matching gift program makes your donation go further. For details, contact Bill Gross at 267-426-6464.
Education today determines the quality of care and scientific discoveries of the future.
Percent of youth 4 – 17 ever diagnosed with attention-deficit/ hyperactivity disorder
happen every day. Imagine what happens in a year.
Source: National Survey of Children’s Health, 2007, Centers for Disease Control and Prevention
The CHOP Annual Report. This year, online only. Visit chop.edu/ar. We’ll send you a link as soon as it’s live. Children’s View
One Family’s Experience with Autism, and CHOP’s Efforts to Help 10
rock Ott was approximately 2 years old when his parents, Brian and Naidona, began to notice differences between him and other kids his age. Their research seemed to point to autism, but his local pediatrician and a neurologist both dismissed the idea. It wasn’t until he was 6 years old, entering first grade, that Brock was diagnosed with an autism spectrum disorder (ASD), a group of complex developmental disabilities that cause problems with social interaction and communication.
Brock Ott, 11, was diagnosed with an autism spectrum disorder at age 6. Since then, his participation in research studies at CHOP’s Center for Autism Research has helped pave the way to diagnosis and treatment breakthroughs for future generations, and made his transitions through childhood a little smoother.
The Centers for Disease Control and Prevention estimates that autism spectrum disorders affect one in every 110 children aged 3 to 17 in the United States, and the rate of ASD diagnoses continues to rise 10 to 17 percent annually. Although ASDs are more common today than childhood cancer, juvenile diabetes and pediatric AIDS combined, little is known about their cause or the most effective treatment. As ASD diagnoses soar, learning more about the condition has become more pressing than ever. That was the driving force behind the creation in 2008 of the Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia, the largest center of its kind dedicated exclusively to autism spectrum disorders. By enabling earlier diagnoses and developing more effective treatments, CAR hopes to minimize the time families like the Otts spend searching for answers.
Breaking Through Autism is a “spectrum disorder,” meaning that children affected by it show symptoms that range from mild to severe. Brock is on the high-functioning end of the spectrum, with above-average intelligence, but noticeable social, behavioral and language issues. At age 4, he had a 20-word vocabulary when his peers were virtual chatterboxes, and he had trouble with his memory; he couldn’t even remember the names of family members. His parents and family referred to these qualities as “Brockisms.” He would get fixated on particular things. “I think he watched Chitty Chitty Bang Bang 100 times and never got bored,” Naidona says. Though a sweet kid at heart, he didn’t interact much with other children, didn’t make eye contact or continued >> Children’s View
Brock and other kids participating in CAR’s brain-imaging research can become acclimated to an MRI by practicing on the Center’s mock MRI, pictured here.
smile, and didn’t want to be touched. He had trouble with the textures of certain foods, talked in a monotone voice and displayed behavior like flicking his fingers and walking on his tiptoes. “When he was little, I would say, ‘OK, I want three hugs today.’ And he would give me three hugs, and that was it,” Naidona says. “It was very awkward for him.” Most troubling were the “catastrophic breakdowns” Brock had when switching from one activity to another. “It wasn’t your typical ‘terrible twos’ meltdown,” Naidona says. With three older children, the attention devoted to Brock wore on the family at times. “You feel horrible for your child because you feel like they’re not happy,” Naidona says. “You don’t know what to do. And you have the guilt that you’re spending all this time on this child who is so difficult. What about the other kids?” When Brock was 4, his parents enrolled him in the same New Jersey private school his siblings and father had attended, but the meltdowns were too much for the school to handle. 12
“The teachers at the private school were old-school in that if they saw a child having meltdowns, their response was to crack down, and that just made it worse,” Brian says. After Brock was asked to leave the school midway through the year, his parents enrolled him in first grade at a public elementary school. It was there he was finally diagnosed with an ASD and began to get autism-specific intervention. Soon after the diagnosis, the Otts learned about CAR. CAR’s mission — helping families living with an ASD — is based on the belief that scientists need to understand the causes of ASDs to enable earlier diagnoses and more effective treatments. With more than 20 principal investigators and 16 autism clinicians collaborating on nearly 20 integrated projects, scientists at CAR are investigating how differences along the spectrum might be linked to different causes and are tackling some of the largest ASD studies ever conceived. In exchange for participation in research studies, children with ASDs receive comprehensive evaluations that yield detailed reports written by CAR’s expert autism clinicians. These reports, accompanied by individual consultations, are one of the reasons Brock, now 11, and his family chose to take part in several CAR studies. continued on Page 14 >>
Bringing Treatment to the Classroom
Most school-age children on the autism spectrum — as many as 330,000 a year — receive the majority of their treatment in public school classrooms, where outcomes of intervention can be as varied as the expressions of autism itself. Researchers at CHOP’s Center for Autism Research, led by David Mandell, Sc.D., CAR’s associate director, are working in the trenches with the Philadelphia School District to understand and remedy that disparity. He is leading the Philly Autism Instructional Methods Study (AIMS), the largest-ever randomized clinical intervention trial for ASD, to learn which treatments are most effective for which children and how to maximize the impact of classroom interventions. “Forty years ago, even 30 years ago, we thought about these kids as headed for institutions. The best we could do was put them in some kind of bucolic residential setting where they would live out their days,” Mandell says. “But that’s not good enough. We need to work toward making them productive, happy citizens in our society.” As of today, more than 60 teacher and assistant teams have been trained, and more than 450 kids have been enrolled in the program. “We’ve seen examples of kids who at the beginning of the year were violent, had no language and were completely uncommunicative, and, by the end of the year, they’re engaged, they’re talking, they’re able to interact in a much more acceptable way,” Mandell says. Sindi Tharpe, a K-2 autism support teacher at William McKinley Elementary School in Philadelphia, took the CAR training last year, learning the interventions, how to set up her classroom and use new materials. In place of the chaos that sometimes reigned in the past, the class now has a set curriculum and set schedule that gives students more structure and leads to better outcomes. Lessons are taught one-on-one and focus on different language skills, such as responding to language and expressing themselves through language. They also work on functional academics ranging from matching pictures with words to addition and subtraction to reading comprehension and vocabulary. Tharpe documents students’ progress daily, rewarding them for success as they work to master each lesson and move on to the next goal.
Students in an AIMS classroom in Lewis C. Cassidy Elementary School in Philadelphia receive one-on-one instruction from a team of educators.
“The program itself is really self-explanatory, and the lessons are great,” Tharpe says. “You can see the gains in the children, which makes you want to continue.” n
Outsmarting Autism << continued from Page 12
CAR’s FaceStation video game (image at left), developed by center director and brain-imaging researcher Robert Schultz, Ph.D., helps enhance face perception skills of children with ASDs.
“Brock has participated in any studies he qualified for,” Brian says. “I leave it up to him. His nature is that he wants to help and I encourage that.” One study used cutting-edge neuroimaging techniques and infrared laser eye tracking to determine how differences in Brock’s brain account for some of his social and communication deficits. Using magnetic resonance imaging (MRI), a research group led by Robert Schultz, Ph.D., CAR’s director and holder of the Regional Autism Center Endowed Chair at Children’s Hospital, found that abnormal neural connections within the brain’s limbic system contribute to difficulties with social relationships, such as face identification, among children with ASDs. Brock also tested therapeutic video games Schultz developed as a result of this study. By asking the children to match a face with the emotion that person is feeling — say, a frown with sadness — they aim to teach children with ASDs how to read social situations. Another study led by Timothy Roberts, Ph.D., vice chair of Radiology Research at Children’s Hospital and holder of the Oberkircher Family Endowed Chair in Pediatric Radiology, uses magnetoencephalography (MEG), an advanced technology that measured the real-time electrical activity in Brock’s brain, to study language impairments. Through that study, Roberts found that children with ASDs process sounds a fraction of a second slower than other children.
Offering Families Support Researchers at CAR believe that studying infant siblings of children with an ASD can potentially unlock valuable clues to the condition, as siblings of children with an ASD are themselves up to 30 times more likely to have an ASD or more subtle symptoms of an ASD than children from other families. CAR evaluates mothers of children with autism from the start of a new pregnancy. The study explores environmental risk factors for having another child with autism and follows the developmental progress of the newborn. Although Brock’s three older siblings don’t have autism, Vienne, Brock’s 19-month-old sister, is participating in a different infant study, led by Schultz and colleague Sarah Paterson, Ph.D., that will help reveal the earliest developmental signs of ASDs, including changes in the brain. By following 14
infant siblings of children with an ASD from 6 months until 3 years of age, researchers hope to relate differences in the brain to developmental delays in cognition and social development, with the goal of establishing markers that can trigger intervention earlier in life when the brain is more malleable. “What CAR is doing to help come up with a concrete diagnosis for autism is invaluable,” Brian says. “If Brock had been screened earlier, we could have started to work with him when he was 3 instead of 6.” After his diagnosis, Brock was placed in a special classroom where he received autism-specific intervention and social skills training. By the end of that school year, Brock’s parents started to see progress. Today, he has been mainstreamed for a number of subjects, and his meltdowns are few and far between. As Brock continues to participate in new research studies at CAR, he is evaluated each year, yielding reports that help his parents and teachers address new issues as they arise. “The reports from evaluations are probably the biggest single thing right now helping my wife and me adjust to what he’s dealing with in middle school,” Brian says. “Because of those evaluations, we were able to tell his teachers where to expect problems, instead of reacting after the problem.” For example, a CAR re-evaluation identified a weakness with Brock’s language skills, specifically his working memory, which in turn explained why he struggled writing essays. Brock’s teachers have adjusted his curriculum based on this finding, providing him more writing guidance and teaching him how to use outlines.
The school also created a communication plan to alert his parents to any new language problems. “The Center has been extremely helpful in not only helping us understand Brock, but helping us to understand autism better,” Brian says. “We participate in studies to help others, but what we get back is feedback from the team at CAR that really helps us with specific issues Brock struggles with.” Today, Brock is an extremely bright kid who devours books and dives headfirst into his passions, which include composting, gardening, making videos with his digital camera, technology and science.
“I have seen him come so far. Everyone who’s been around him has seen him grow, and they can’t believe the change,” Naidona says. Not only does Brock contribute his time to CAR’s groundbreaking ASD research, he has even bigger plans to change the world. “He wants to build a plant that makes fuel from algae, and after that business is successful, he wants to figure out a way to do something positive with used cigarette butts,” Brian says. “He wants to make the world a greener, cleaner place.” To read more about the Center for Autism Research, please visit www.giftofchildhood.org/ChildrensView. n
Visionary Support Thanks to a type of brain imaging called magnetoencephalography (MEG), CAR’s Timothy Roberts, Ph.D., was able to show that children with ASDs process sounds a fraction of a second slower than other children. As Roberts and other researchers at CAR continue to study the earliest signs of autism, Roberts wanted to repeat the study with the infant siblings of children with ASDs. To do so, he is creating the first-ever “mini-MEG” system, made possible by gifts from the Christina and Jeffrey Lurie Family Foundation and the Nancy Lurie Marks Family Foundation. Small enough to accommodate children ages 18 months to 2 years, the mini-MEG will be the world’s first whole brain MEG system for infants. This equipment will complement the existing MEG system at CHOP’s Lurie Family Foundation’s MEG Imaging Center. CHOP is one of only two freestanding pediatric hospitals in the United States to have even one MEG system. In addition to its main role in the Center for Autism Research at CHOP, the mini-MEG will also help Children’s Hospital physicians study epilepsy and other seizure disorders and map the brain in preparation for surgery. The Lurie family, owner of the Philadelphia Eagles, has been a strong supporter of CAR since its beginning
From right, Tim Roberts, Ph.D., vice chair of radiology; Christina Lurie; Diego Jaramillo, M.D., M.P.H., radiologist-in-chief; and Philip Johnson, M.D., chief scientific officer, with the MEG. in 2008. In April 2010, the Luries partnered with CAR to create the first-ever Huddle Up for Autism, an autism awareness event at Lincoln Financial Field. The event attracted nearly 5,000 people and featured tours of the stadium and the Eagles locker rooms; appearances and autographs by Eagles players, cheerleaders and the team mascot, Swoop; a display of art created by CAR research participants; and other fun activities like arts and crafts, games, face-painting, moon bounces, and obstacle courses. It coincided with CAR’s launch of autismMatch, a research database that will expand CAR’s efforts to zero in on the genetic causes of ASDs and match children to research studies. CAR hopes to add 7,500 children with ASDs to autismMatch by the second Huddle Up for Autism on April 10. n
Donor Focus David Akers
Someone to Count On Eagles Kicker David Akers Is a Frequent Visitor at CHOP
“I’ve seen how tough a child’s illness is on the whole family,” says Akers. “We want to do what we can to make a family’s stay a little easier.” When David Akers stops by the Hospital, patients smile. During a visit to the Pulmonary Inpatient Unit in November, Akers chatted with Madeline Bankes, 8, (facing page) and Christopher Brooks, 20 (left).
as the experience was, they saw how financial struggles could further compound a family’s distress. Many children sat alone in their rooms because their families could not afford to be there.
During football season, Akers visits the Hospital almost every week to help raise the spirits of children and their families. In addition, his foundation, David Akers Kicks for Kids, has raised more than $250,000 for Children’s Hospital.
Akers’ response was to create David’s Locker, a social work fund used to meet unexpected or emergency expenses for CHOP patients and their families. In the past, the fund has helped with necessities like utility bills, car insurance premiums or the cost of medical equipment not covered by insurance. When the father of a leukemia patient was laid off, David’s Locker provided gift cards to help keep food on the family’s table. “I’ve seen how tough a child’s illness is on the whole family,” says Akers. “We want to do what we can to make a family’s stay a little easier.”
f there’s one thing Philadelphia Eagles kicker David Akers is known for on the field, it’s his consistency. A fourtime Pro Bowler and a 12-year veteran of the Eagles, he is the NFL’s leading points scorer since 2000. But few people realize how consistent he is in another respect: His unwavering support of CHOP has been truly remarkable.
“He’s very warm and caring with the kids,” says Madeline Bell, CHOP’s president and chief operating officer. “And whether it’s donating his kicking shoes for an auction to benefit CHOP or leading the warm-up exercises at our Healthy Kids Day, I have never known David to turn down the opportunity to help.” On one recent visit to 5 West, child life specialist Elise Ehrenreich introduces Akers to a young girl sitting silently in her hospital bed. “Do you like sports?” he asks her. The girl shakes her head no, looking at him with a wary expression. “She rides horses,” volunteers a relative. Akers, a Kentucky native, has his in. “What kind of horse do you have? How many hands high is it?” Within minutes, the girl brightens, her sadness visibly melting away under Akers’ upbeat questioning. As he bids her goodbye, Ehrenreich shakes her head in amazement. “That is the first time I’ve seen her smile the whole time she’s been here.” Akers had been visiting CHOP since 1999, but in 2004, his connection became personal. Just before Christmas, Akers’ 2-year-old son, Luke, developed a serious MRSA infection around his eye. The week Luke spent at Children’s Hospital was agonizing for Akers and his wife, Erika. But as challenging
To support the fund, Akers runs an annual fundraiser, Kicking in Spring. This year his foundation also held “An Evening of Comedy & Magic” at the Kimmel Center in Philadelphia. Fellow Eagle Jon Dorenbos, who periodically joins Akers in his weekly visits, was the host and one of the performing magicians. Akers also started a program called Field of Dreams, which gives CHOP patients tickets to an Eagles home game. On the day of the game, Akers surprises the kids by personally meeting them on the field before the game and giving them a shopping spree in the Eagles Pro Shop. For Akers, the children at CHOP help him keep a perspective on life. “I’m a competitor and I want to do well, but in the end, football is just a game,” he says. “These incredible kids show me again and again that there’s more to life than a couple of kicks.” To read more of our interview with David Akers, please visit www.giftofchildhood.org/childrensview. n Children’s View
Family Focus The Cardiac Center
Abby at a park near her Philadelphia home. This energetic
After receiving the same rare diagnosis that ended in tragedy decades before, a family finds a whole new world in cardiac care. 18
18-month-old has had two heart surgeries at Children’s Hospital and will have a third in the spring.
t felt as if lightning had struck twice. Jack Rychik, M.D., director of the Fetal Heart Program at The Children’s Hospital of Philadelphia, looked at the ultrasound image and gave expectant parents Tara and Adam devastating news: Their unborn baby’s heart had only three functioning chambers, instead of the normal four. Tara immediately understood the gravity of the diagnosis. Twenty-eight years before, her little sister Erin had been born with the same extremely rare heart defect. Despite medicine’s best efforts at the time, she died at the age of 3. Though she now feared for her own child, Tara soon realized how much had changed in the decades since her sister’s death. For one thing, her baby, still in the womb, was already a patient of the renowned Cardiac Center at Children’s Hospital.
Beyond Survival Babies born with complex heart defects once faced dismal odds. Today, thanks to CHOP and other institutions that have pioneered advances in surgical repair, catheterization techniques and treatment strategies, most survive. But survival was only the first step; doctors are now looking to the rest of the child’s life. As these children age — the oldest are in their 20s and 30s — many experience significant complications, such as liver and lung disease, growth delays, and learning disabilities. The next great challenge for clinicians and researchers is to understand why these late effects occur and how they can be mitigated or even prevented.
Abigail Tara gave birth to Abigail Brigid Heinze in Children’s Hospital’s Garbose Family Special Delivery Unit. In her first two years of life, this determined little girl has undergone two open-heart surgeries, and will soon have a third. She has been cared for by some of the world’s leading pediatric cardiac clinicians. But one of the most innovative aspects of her care is just beginning. Abby is among the first patients to enroll in CHOP’s NeuroCardiac Care Program (NCCP), created to follow children with complex congenital heart defects from infancy onward. The NCCP is led by Gil Wernovsky, M.D., medical director, and Jean M. Carroll, R.N., M.S.N., program manager. The program brings together specialists from multiple disciplines to screen for issues such as learning disabilities, motor-skill delays and other developmental problems. Not only will current patients reap the benefits of such focused attention, research conducted by the program will provide invaluable learning and help improve long-term neurodevelopmental outcomes for future patients.
Steady Support The generosity of donors helps the Cardiac Center offer children like Abby innovative programs. Abby is followed by the NeuroCardiac Care Program, a multidisciplinary team that tracks her developmental progress and will provide help quickly, should she need it. The Women’s Committee of The Children’s Hospital of Philadelphia recently provided a grant to fund educational materials, a database, and the purchase of therapy equipment and screening tools. The grant will also be used to assist those families who require additional support for transportation, meals, parking and other costs that quickly add up. Abby will have the opportunity to be part of the Single Ventricle Survivorship Program, for children whose hearts have one pumping chamber instead of two. This year, proceeds from the Daisy Day Luncheon, the largest annual volunteer fundraising effort supporting CHOP, will benefit the program. The 2011 event is Wednesday, April 27, at the Park Hyatt Philadelphia at the Bellevue. For details, go to giftofchildhood.org/daisyday. February is American Heart Month. Learn more at heart.chop.edu. Take a virtual tour of the Cardiac Center, read about more of our amazing patients and learn how you can help!
“When our patients experience problems, such as difficulty in school,” says Wernovsky, “those are our problems, too. We want to empower families to best manage their children’s care and ensure they thrive.”
For Abby’s family, her remarkable progress brings some resolution to the tragedy they faced many years ago. Her grandmother, Carol, still grieves the daughter she lost, but rejoices in hope for Abby’s long life.
Abby will also have the opportunity to be part of CHOP’s new Single Ventricle Survivorship Program, an interdisciplinary effort focused specifically on the unique needs of children whose hearts have just one ventricle. Led by Rychik, the program will enroll patients from across the nation. As with the NCCP, there will be a constant and reciprocal flow of knowledge from research lab to clinic — today’s patients both benefiting from and contributing to the development of ever-improving treatment strategies.
“Watching Abby thrive is happiness,” she says. “It makes me so proud that we’ve come this far — to have been a part of it, to know that Erin’s life wasn’t in vain.” n
As Rychik observes: “In one generation, a baby succumbs. In the next, a baby survives, but with a new set of challenges, many of which are unexpected. While we are optimistic, the future is uncertain. Our efforts must continue to be focused on finding solutions to these new challenges, in order to help today’s survivors as well as generations yet to come.”
in Fast Forward,
Incredible Kids, Incredible Year: Abby is featured CHOP’s 2010 Annual Report, along with Roberto, Ryan, Catherine and other amazing patients. The report is online only this year. Visit www.chop.edu/ar, and we’ll send you a link as soon as it’s live. Children’s View
Neuroblastoma Patients Find Hope in Unique Cancer Study at CHOP
t was one of the greatest comebacks in college basketball history: The underdog 1983 North Carolina State Wolfpack, coached by Jim Valvano, scored a last-second basket to win the NCAA national championship. It was a triumph of teamwork, determination and heart — qualities Valvano drew on when a decade later he was diagnosed with bone cancer. Shortly before Valvano passed away from the disease in 1993, he made an emotional speech about the need to support cancer research. “Don’t give up, don’t ever give up,” he famously said. The V Foundation for Cancer Research, which he established that year in partnership with ESPN, continues to bring that same drive and indefatigable spirit to the fight against cancer. And recently, The V Foundation invested $600,000 in a potentially game-changing study at The Children’s Hospital of Philadelphia
Building Hope: The Ruth and Tristram Colket, Jr. Translational Research Building is one of two buildings on the Philadelphia campus dedicated to research.
“Advances are desperately needed, to improve cure rates and to decrease the toxicity of treatment and the lasting side effects in survivors. We think this new approach holds great promise.” – Garrett M. Brodeur, M.D.
It all began with a concept Valvano understood well: cooperation. The study was the brainchild of two of the most highly respected physicians in their fields, Garrett M. Brodeur, M.D., the Audrey E. Evans Endowed Chair in Pediatric Oncology, and Robert J. Levy, M.D., the William J. Rashkind Endowed Chair in Pediatric Cardiology. Together, these two CHOP physicians are studying new treatments for a deadly childhood cancer called neuroblastoma by using drug particles so small that millions would fit into the period at the end of this sentence. Known as nanoparticles, they hold enormous promise as a less toxic, more effective delivery system for chemotherapy drugs. Brodeur and Levy’s research will package different chemotherapy drugs into different sizes of nanoparticle — roughly 50 – 200 billionths of a meter — to see which combination is most effective. Nanotechnology research in adult cancer is a hot topic; however, research on its application in pediatric cancer has been limited. “The use of nanotechnology for cancer treatment is relatively new,” says Levy, a pioneer in nanoparticle research who has studied its application in cardiology since the 1990s. “There’s going to be a paradigm shift, and this is the beginning.”
Because neuroblastoma is aggressive and typically has spread throughout the body by the time of diagnosis, children with neuroblastoma must undergo an intense array of treatments, including surgery to remove tumors, chemotherapy, radiation therapy, stem cell transplantation and immunotherapy. “Treatment of high-risk neuroblastoma is very tough on our young patients,” says Brodeur. “Advances are desperately needed, to improve cure rates and to decrease the toxicity of treatment and the lasting side effects in survivors. We think this new approach holds great promise.”
Targeting Tumors Chemotherapy drug molecules are so small, they penetrate into all of the body’s tissue, not just the tumor or cancerous area. Nanoparticles, though tiny, are bigger than the drug molecules. Scientists use special processes, such as mixing at speeds faster than the speed of sound, to create nanoparticles from biodegradable materials such as lactic acid or blood serum. The drug molecules are “packaged” inside of the nanoparticles. Capillaries, the smallest blood vessels, provide oxygen and nutrients to tissues throughout the body. Most capillaries block particles larger than 50 nanometers from passing through to the surrounding tissue. But tumor capillaries have larger gaps in their walls. Scientists can engineer the size of nanoparticles so they are small enough to penetrate tumor tissue, but large enough to stay out of healthy tissue. Tumors have a disorganized network of capillaries, so once inside the tumor, nanoparticles become trapped, dissolving and releasing the drug into cancer cells. This increases damage to the tumor cells while sparing more of the body’s normal tissue. “This will add a tremendous amount of depth to what can be done in administering chemotherapy drugs,” Levy says. Scientists can also engineer the surface of nanoparticles to confer specific advantages over conventional drugs. For example, a nanoparticle drug can be “hidden” from the immune system, which is designed to keep us healthy by attacking and eliminating foreign particles like bacteria or waste products like old red blood cells. By altering a nanoparticle’s surface, scientists can trick the immune
Tiny Particles, Huge Potential Anticancer Drug Imaging Agents Stealth Agents Targeting Agents
When scientists create nanoparticles in the lab, they control the contents. In addition to the chemotherapy drug, the particles can be loaded with chemicals, proteins, antibodies and other agents to make them “trackable” by MRI. This hides them from the body’s natural immune system and makes them “stick” to cancer cells.
system into allowing them to stay longer in the bloodstream. Each time the nanoparticles circulate past the tumor, more are absorbed. In addition, the surface of nanoparticles can be tagged with markers that “light up” under an MRI or other imaging. By attaching imaging agents to the nanoparticles, doctors can tell if the drug is reaching the tumor and get a better sense of where the tumor is located and whether it has spread. Finally, the surface of nanoparticles can be modified with chemicals, proteins or antibodies that make them stick specifically to the cancer cells. These surface modifications can also “trick” cancer cells into absorbing the nanoparticle — like a Trojan horse loaded with a chemotherapy drug. If Brodeur and Levy’s research is successful, it would have applications beyond pediatric neuroblastoma, giving physicians everywhere another tool to fight cancer in children and adults. “The same approaches developed here could be applied to the targeted delivery of virtually any drug in any solid tumor in children or adults,” Brodeur says. And that would be an achievement to make Coach Valvano proud.
V.I.P. Volunteers in Philanthropy
Circle of Care Members Meet in Atlanta Some of Children’s Hospital’s most generous supporters traveled to Atlanta for the annual Children’s Circle of Care North American Leadership Conference and Gala. The Children’s Circle of Care recognizes individuals or couples, family foundations, and privately held companies that contribute $10,000 or more in a calendar year to one of 25 participating hospitals in the United States and Canada. This past spring, Children’s Healthcare of Atlanta hosted the event. Pictured at the gala from left to right are: Mark Fishman, chair of CHOP’s Children’s Circle of Care; Su-Jen Lin; Steven M. Altschuler, M.D., CEO; Eileen and Harold Friedland; and Jerry and Harriet Paley.
The Children’s Hospital of Philadelphia and the Children’s Circle of Care are grateful to the following sponsors for their support of the 2010 North American Leadership Conference and Gala: Founding Sponsors Costco Wholesale The Oki Foundation Platinum Sponsors Aflac The Coca-Cola Co. Gold Sponsors Waffle House/Waffle House Foundation Silver Sponsors The H.N. and Frances C. Berger Foundation Cox Enterprises The John N. Goddard Foundation Georgia Power Holder Construction Co. three UPS The Zeist Foundation Inc.
1, 2 Ninth Annual 98.1 WOGL Loves Our Kids Radiothon On Sept. 10 and 11, Ross Brittain and the Breakfast Club ditched their studio digs and traveled to Children’s Hospital for the Ninth Annual WOGL Loves Our Kids Radiothon. The whole gang was welcomed with open arms by Hospital physicians, nurses, staff, patients and families as fun and excitement filled the Colket Atrium. When the Radiothon concluded, WOGL faithful delivered in a BIG way … more than $492,000!
3, 4 “All In” for Kids Poker Tournament With support from 11-time World Series of Poker Bracelet Winner Phil Hellmuth, actor and comedian Steve Martin and book author Amy Tan, the “All In” for Kids Poker Tournament, held at the Mandarin Oriental in New York City, raised more than $900,000 to benefit the Center for Fetal Diagnosis and Treatment at CHOP. The winner of the tournament was John Foley of Boston. Sponsored by grateful
family and honorary chairs Jami and Joel Friedman of Huntington, N.Y., proceeds from the third annual “All In” for Kids Poker Tournament support pioneering work in fetal medicine to offer hope to babies yet to be born. See video and more photos at allinforkids.org.
5 Fourth Annual Andrew’s Army Golf Classic The Fourth Annual Andrew’s Army Fall Golf Classic, held each year in Connecticut, was a big success with more than 28 foursomes playing. More than $100,000 was raised for childhood cancer research.
6 Kortney’s Challenge The Fifth Annual Kortney’s Challenge — a 2-mile fun run/walk and Day at the Races Event held Aug. 29 at Monmouth Park Racetrack in Oceanport, N.J. — was the most successful ever, with more than 500 participants. The event benefits pediatric brain tumor research.
V.I.P. Volunteers in Philanthropy
8 7 Women’s Committee of The Children’s Hospital of Philadelphia 45th Annual Holiday Boutique The 2010 holiday season kicked off at the Merion Cricket Club by raising more than $230,000 to support patient care, research, and educational programs. Special thanks to the event’s platinum sponsors — Pemcor Printing Co., TrionTM, and Mr. and Mrs. John C. Weber Jr., David Oberkircher of Trion is pictured with Holiday Boutique Co-chairs Susanne Coffin and Peggy Anne Bozzi, and CHOP CEO Steven M. Altschuler, M.D.
8 The Children’s Hospital of Philadelphia Ninth Annual Buddy Walk® and Family Fun Day More than 4,500 people came out to Villanova University to support the Trisomy 21 (Down syndrome) Program and helped raise more than $225,000. Sponsors included the Auto Dealers CARing for Kids Foundation and Seneca Foods Co.
9 An Evening of Hope Robert Baldassano, M.D., and David Piccoli, M.D., present Evening of Hope Co-chairs Nancy and Jeffrey Fine with children’s art to thank them for their Diamond Sponsorship of the event. The Evening of Hope raised $368,000 for the Center for Pediatric Inflammatory Bowel Disease. 24
10 Hyundai Hope on Wheels Members of Hyundai Motor America and local Hyundai dealers presented the Center for Childhood Cancer Research with checks totaling $200,000 during August and September visits. The Hyundai Hope on Wheels program, which supports pediatric cancer research, gave funds to Vandana Batra, M.D., Lisa Wray, M.D., and Jane Minturn, M.D., Ph.D.
11 Monte Carlo Night The Fifth Annual Monte Carlo Night, presented by the Marriott’s Philadelphia Business Council, raised $104,000 for Children’s Miracle Network at The Children’s Hospital of Philadelphia.
12 First-ever ‘Making Miracles Happen’ Golf Outing presented by Maaco Maaco Franchising Inc. held its first-ever “Making Miracles Happen” Golf Outing benefiting Children’s Miracle Network at Children’s Hospital, and raised $19,000!
15 13 Walk for Hope The second Walk for Hope was held Oct. 9 at Veterans Park in Hamilton, N.J. The walk raised more than $30,000 for the Hospital’s Center for Pediatric Inflammatory Bowel Disease.
14 Dairy Queen Miracle Treat Day Miss New Jersey Ashleigh Udalovas, right, and Miss New Jersey Outstanding Teen Andie Babusik, left, served treats to benefit CHOP at the Dairy Queen at 5300 Boardwalk in Wildwood, N.J.
15 Big Hearts to Little Hearts Fourth Annual Walk Members of the Big Hearts to Little Hearts committee, a group that raises funds for research and care for pediatric cardiac patients, presented a $100,000 check to Thomas Spray, M.D., and Susan Nicolson, M.D., of the Cardiac Center.
Four Seasons Parkway Run & Walk for Children’s Cancer Research On Sept. 26, a record-breaking 7,239 (top) people gathered on Logan Square for the Four Seasons Parkway Run & Walk, and raised more than $670,000 for CHOP’s Cancer Center. Sponsors included Four Seasons Hotel Philadelphia, Philadelphia Insurance Companies and Grainger. Bottom: John Maris, M.D., director, CHOP’s Center for Childhood Cancer Research, left, and Paul Urian, senior director of Human Resources at Four Seasons, right, cheered participants at the finish line.
Upcoming Events Buck a Bird • 2/5 • Hernando Sportsman’s Club, Brookeville, Fla. • Neurosurgery and Critical Care Fund Advances in Pediatric Medicine Series* – Asthma Research and Clinical Care • 2/7 • Drexelbrook, Drexel Hill, Pa. Advances in Pediatric Medicine Series* – Plastics Surgery • 2/17 • Palm Beach, Fla. Advances in Pediatric Medicine Series* – Liver Transplant/General Transplant • TBD • J.G. Domestic, Philadelphia Odai Jian XLP Awareness Walk • 3/2 • Euless, Texas • XLP Research Advances in Pediatric Medicine Series* – Childhood Cancer/Neuroblastoma • 3/8 • Location TBD IHOP National Pancake Day • 3/8 • Participating locations • Children’s Miracle Network Big Hearts to Little Hearts Reception and Silent Auction • 3/26 • Spring Lake Manor, Spring Lake, N.J. • The Cardiac Center Childhood Friends Wine Tasting & Reception • 4/1 • Location TBD • Various patient programs Advances in Pediatric Medicine Series* – Reach Out and Read • 4/7 • Villanova, Pa. Huddle Up for Autism • 4/10 • Lincoln Financial Field • Center for Autism Research 2011 Daisy Day© Luncheon • 4/27 • Hyatt Philadelphia at the Bellevue • The Cardiac Center/Division of Cardiology *Advances in Pediatric Medicine offers families an opportunity to engage with medical leaders and experts from The Children’s Hospital of Philadelphia on a variety of topics. These are educational programs in an intimate setting designed to connect the community with the groundbreaking work that is done here at CHOP.
For details on upcoming events, visit
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 that your event is listed on our website. 26
16 Third Annual RE/MAX Miracle Challenge RE/MAX 1st Choice held its third annual RE/MAX Miracle Challenge at Back Creek Golf Club in Middletown, Del., and raised $25,000 for Children’s Miracle Network at CHOP.
17 The Corn Hole Tournament This Baggo Tournament was held for the first time on the beach in Stone Harbor, N.J., in July. While having a lot of fun, the group raised approximately $4,000 for CHOP’s Cancer Center.
18 April’s Run April’s Run, a 5K walk/run held each September, raises $10,000 each year to support families of our Pediatric Intensive Care Unit patients.
19 Hailey Invitational The second annual Hailey Invitational Golf Outing in July raised approximately $6,000 to support cystic fibrosis research.
20 Austin Fibromatosis Walk In September, individuals and teams gathered at Bowers Park in Bowers, Pa., for the third annual Austin Fibromatosis Walk-a-Thon. Participants enjoyed music, carnival games, children’s crafts and moon bounces. In the past three years, more than $46,000 has been raised for the Austin’s Fibromatosis Research Fund at Children’s Hospital.
Duane, 3 months
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