Children's View Fall 2010 by The Children's Hospital of Philadelphia

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Where there’s a Charlie, there’s a way.

Fall 2010

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Charlie, 3, neuroblastoma

Clinicians at the forefront of childhood cancer treatment. Pioneers in complex surgery for congenital heart defects. Leaders in the miraculous field of fetal therapy. The world’s largest genomic research program in pediatrics.

We’re proud to be among the top-ranked hospitals named to the 2010 U.S.News & World Report Honor Roll.

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Every remarkable resource and every waking moment at The Children’s Hospital of Philadelphia are dedicated to one goal: curing Charlie. And every child entrusted to our care.

Colket Research Building Dedicated Legacy Gift Anchors IBD Research

Contents

Invest

Fall 2010 3

The View from Here

CHOP News Roundup

in Hope.

10 Cover Story Sharing CHOP’s Expertise with the World 16 Donor Focus

Center for Pediatric Inflammatory Bowel Disease

September 2010 – January 2011

18 View Calendar

Charitable Gift Annuity

20 Volunteers in Philanthropy 24 ViewPoint

Sister Alice Strogen, S.S.J.

26 Pediatric Research

PolicyLab

Extraordinary Partnership: You support the future of the nation’s top-ranked children’s hospital. We guarantee you income for life. Income for Life: Rates are based on the age(s) of the annuitant(s) in the year of funding. As of July 2010, rates for a one life annuity are as follows:

On the Cover:

Please recycle. Children’s View is printed on 50 percent recycled paper and 25 percent post-consumer waste paper.

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for life in exchange for your gift. And you propel our mission forward. Children’s Hospital not only provides compassionate care for countless children, it is also home to one of the largest pediatric

This child, from the Dominican Republic, is one of hundreds helped by CHOP’s Global Health Department, which strives to improve the health of children worldwide. For information about making a contribution to support CHOP, call 267-426-6500 or visit GiftofChildhood.org.

You receive guaranteed, fixed income

Age

Rate

Age

Rate

9.5%

5.8%

8.1%

5.5%

7.2%

5.2%

6.4%

5.0%

For example, if you are 75 years old and you establish a $25,000 charitable gift annuity, you will receive guaranteed income of $1,600 (6.4% of $25,000) per year for life and you are also eligible for a charitable tax deduction for a portion of the $25,000.

research facilities in the world.

To receive an obligation-free illustration, please contact Sean T. Gallagher, director of Planned Giving, at 267-426-6472 or GallagherSE@email.chop.edu.

org/plannedgiving

The View from Here All children deserve access to quality healthcare — whether they live in South Philadelphia, South Jersey or southern Africa. The Children’s Hospital of Philadelphia is working to make that access a reality. Through the Global Health Department, led by Rodney Finalle, M.D., CHOP is reaching out to children living in extreme poverty in developing countries, with a focus on the Dominican Republic and Botswana. CHOP now has physicians living and working in those countries, as well as teams of doctors, nurses and other professionals who visit regularly. They work with healthcare providers and institutions there to reduce the number of children who die of preventable, treatable diseases. Our staff directly treat the children in greatest need, while also training local care providers and conducting research to make a lasting and sustainable impact on pediatric health. Read the full story on Page 10. PolicyLab of the CHOP Research Institute is also making an enduring impact on children’s health by using evidence-based research to advocate for improved health policy. Topics addressed by PolicyLab range from foster care to support for caregivers of children with complex conditions, from healthcare access to teen education about sexually transmitted diseases and pregnancy. Learn how Co-directors David Rubin, M.D., M.S.C.E., and Kathleen Noonan, J.D., and their team are making a difference (Page 26). When the family of a sick child is facing a difficult or complicated surgery, spiritual support can be an enormous help. During those times, Chaplain Sister Alice Strogen, S.S.J., is a familiar face and a welcome presence. Spend a day with Sister Alice as she tirelessly pursues her calling (Page 24). One thing all these endeavors have in common: They rely on support from donors. Your generosity allows us to cure, advocate for and comfort children and families here — and across the globe. And that creates a truly lasting impact.

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, Communications and Donor Relations Kim Caulfield Director, Development Communications Nicole Keane Associate Director, Development Communications Rebecca Elias, Tom Yates Contributing Writers 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 Ryan Littman-Quinn/rlqcreative.com Additional Photography Children’s View is produced by the Marketing Department of The Children’s Hospital of Philadelphia and The Children’s Hospital of Philadelphia Foundation. Comments and inquiries should be addressed to: Editor, Children’s View Public Relations, Communications and Marketing Department The Children’s Hospital of Philadelphia 34th Street and Civic Center Boulevard Philadelphia, PA 19104-4399 giving@email.chop.edu Prefer to receive Children’s View electronically? E-mail your name and address from the back cover to ViewOnline@email.chop.edu and you’ll get a message with the link to each new issue when it’s published. Read it online at GiftofChildhood.org (click on “publications”).

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CHOP News Roundup “It is our hope that this chair will lead to new successes and hopefully cures, not just for aplastic anemia but for all bone marrow failures.”

The Buck Family: Elia and Jim and their children Jim and Cackie

– Elia Buck

Child’s Rare Illness Leads Buck Family to Endow Chair It was the speed of her illness that was so shocking. In late 1974, Anne Garrett “Sissy” Buck was a senior at the top of her class at the Shipley School in Bryn Mawr, Pa., headed for Princeton University the following year, when she was diagnosed with aplastic anemia, a rare and wrenching blood disorder. Her parents, Elia and J. Mahlon (“Jim”) Buck Jr. of Haverford, Pa., sought opinions from experts across the country. Family members were tested for a bone marrow transplant match. The national bone marrow database in Seattle was scoured. The seasons turned with no success. That spring, Sissy received her diploma in absentia, and a few days later she lost her fight. Aplastic anemia strikes no more than six people per million. You are more likely to be hit by lightning than to have the disorder. After Sissy’s passing, the Buck family, Elia and Jim and their children Jim and 4

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Cackie, continued to be involved in and supportive of research into the disorder. They participated in genetic studies aimed at understanding the basis of the disorder and kept up to date on research on bone marrow failures. Registry with the National Marrow Donor Program is an important cause for them, as are periodic blood drives. Over the years, the Buck family steadfastly supported The Children’s Hospital of Philadelphia, particularly the research of CHOP oncologist William L. Elkins Jr., M.D., now retired. “We were always looking for ways we could help advance the research, and ways to honor Sissy’s memory,” says her father. In 2007, family friend and CHOP trustee George Lemmon Jr. approached Sissy’s brother, Jim, about making a leadership gift to Children’s Hospital as part of the Hope Lives Here campaign. Lemmon helped arrange a meeting between the Bucks and with CHOP’s Physician-in-chief Alan R. Cohen, M.D., a noted hematologist. Cohen articulated a vision for an expanded research program into blood

disorders and bone marrow failures, capitalizing on CHOP’s large patient volume, the potential synergy with research Centers of Emphasis like the Center for Applied Genomics, and the opening of the new Ruth and Tristram Colket, Jr. Translational Research Building. The first step was recruiting the top pediatric hematologist in the field. “The only way to make major advances in areas like aplastic anemia and the pantheon of bone marrow failures is through a dedicated and well-integrated clinical and research program with strong leadership,” says Cohen, who holds the Leonard and Madlyn Abramson Endowed Chair in Pediatrics. “Our goal was to support a center of excellence,” says son Jim. “We met with Dr. Cohen, heard from scientists and physicians there about CHOP’s work and plans to bring in the best of the best, and we decided that this is the time.” Through a gift from Mr. and Mrs. Buck, the family established an endowed chair that proved to be the tipping point in the Hospital’s effort to recruit Monica Bessler, M.D., Ph.D., one of the world’s foremost experts in aplastic anemia and bone marrow failure. On July 1, Bessler was named as the inaugural holder of the Buck Family Endowed Chair in Pediatric Hematology. Bessler comes from Washington University School of Medicine in St. Louis. The long-term goal of her lab is to delineate the molecular events leading to bone marrow failure and to identify new biomarkers for more accurate diagnosis and more targeted treatments. “It is our hope that this chair will lead

to new successes and hopefully cures, not just for aplastic anemia but for all bone marrow failures,” says Elia. “We wanted to do something that would have the greatest impact for families.” The Buck Family Endowed Chair will also represent a bridge between generations for the family’s philanthropy. “Our parents made the gift for the family,” says Jim. “And because the chair will last, it will always be a part of our family and CHOP. It is important to us that our children know what philanthropy means, that they see the impact of giving.” n

Stimulus Grants, CHIPRA Drive Care, Research Advances Children’s Hospital is one of seven Pennsylvania hospitals and health systems recently selected to lead a fiveyear, $9.7 million initiative funded by the Children’s Health Insurance Program Reauthorization Act (CHIPRA) of 2009. The initiative aims to improve health outcomes for almost 1 million low-income children through the use of pediatric electronic health records, and is one of only 10 such grants awarded throughout the United States.

PolicyLab, the Center for Pediatric Clinical Effectiveness and the Center for Biomedical Informatics will spearhead the initiative at CHOP, known as “QUICKSTEPS” — Quality Improvement and Care for Kids Through Electronic Programs. CHOP’s team will focus on improving quality and coordination of care for children with special healthcare needs by developing previsit assessment tools and links to appropriate community resources and embedding them into electronic health records. This will allow pediatricians to more easily identify and focus on the most important issues for a particular patient continued >

Cancer Center Begins Offering Proton Therapy, Advanced Form of Radiation Treatment Proton radiation therapy, one of the most advanced cancer treatments in use today, is now available to Children’s Hospital Cancer Center patients at Penn Medicine’s Roberts Proton Therapy Center, located across the street from CHOP’s Main Campus in the Ruth and Raymond Perelman Center for Advanced Medicine. CHOP is one of the few pediatric hospitals in the country to offer this highly precise form of radiation therapy. The beam used in proton therapy is able to target radiation directly at the tumor site, minimizing damage to nearby healthy tissue and organs and greatly reducing the risk of both acute and long-term side effects. That kind of precision is especially important when treating children, whose developing organs are particularly susceptible to the effects of radiation. The first CHOP patient to receive proton therapy, a 12-yearold boy with an aggressive central nervous system tumor, started treatment in March. Several other CHOP patients are currently undergoing proton therapy at the facility. Proton therapy complements the many other advanced treatments available to Cancer Center patients. CHOP clinicians work closely with families to develop a personalized treatment plan, and a group of oncologists, nurses, social workers, anesthesiologists, radiologists and physicists meets weekly to identify patients for whom proton therapy might be appropriate. “Proton therapy represents a major advance, especially for children with cancer,” says John M. Maris, M.D., chief of the Division of Oncology at Children’s Hospital and holder of the Giulio D’Angio Endowed Chair in Neuroblastoma Research. “Since our youngest patients have the most to lose due to the side effects of radiation, a more precise and less toxic form of radiation

is a welcome advance that should dramatically improve the quality of life for children who survive cancer.” The Roberts Proton Therapy Center was made possible by a transformative gift from the Roberts family: Ralph and Suzanne, and Brian and Aileen (CHOP trustee 2004 – 2010). n CHOP oncology patient Mikayla Andrews, 10, in the lobby of the Roberts Proton Therapy Center. Children’s View

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Helping Children — and Parents — with ADHD Raising a child with attention deficit/hyperactivity disorder (ADHD) is a challenge for any parent. But when that parent also has ADHD symptoms — as about 40 percent of them do — it can be overwhelming. Thanks to a gift from Shire plc, a specialty biopharmaceutical company with its U.S. headquarters in Wayne, Pa., those parents will have the opportunity to receive targeted parenting help from the Center for Management of ADHD at The Children’s Hospital of Philadelphia. “Effective treatment for children with ADHD requires that parents carefully monitor their child’s behavior, consistently use behavioral modification strategies and stay organized to make sure the child takes medication, if indicated,” says Thomas Power, Ph.D., director of the center. “For a parent with ADHD, those can be difficult tasks.” The Personalized Enhanced Parent (PEP) Training Program teaches parents how to raise their awareness of their own symptoms and counteract tendencies that can interfere with their child’s treatment. Staff from the center will also contact parents between sessions to follow up, see how things are going and answer questions. The PEP Program will be regularly evaluated to see if it improves outcomes for the children. “We’ll also hold focus groups with parents so they can tell us what works and what doesn’t,” says Power. “We’ll be learning from them.” The center treats approximately 1,200 children a year, and its reach extends throughout the CHOP Care Network through education and consultations offered to pediatricians

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The Personalized Enhanced Parent Training Program teaches parents how to:

better regulate their own emotions through cognitive behavioral therapy so they don’t overreact when they get frustrated or impatient with their child’s behavior

collaborate with their child’s teachers and engage in effective problem solving with them

stay organized with tools that remind them to look for positive behaviors to reinforce in their child, track behaviors and check on medications.

at 30-plus satellite locations in the region. It treats more children than any other program in the area and is among the largest programs of its kind in the nation. A second Shire grant will fund a two-year fellowship at CHOP for a physician committed to researching ADHD. Nathan Blum, M.D., a behavioral pediatrician at the center who will oversee the fellow, says the focus of the fellow’s research may include a range of topics. Children’s Hospital is currently investigating the impact of familyschool interventions, service delivery models for underserved children and the genetics of ADHD. The Shire fellow will begin in July 2011. n

and efficiently connect them with available services. “Until now we’ve thought of electronic health records as sort of static; a repository of information,” says David Rubin, M.D., M.S.C.E., senior co- director of PolicyLab. (See related story on Page 26.) “What we’ll be working on over this five-year window is using that information to drive more active decision support and referrals for services.” In addition, the Research Institute at Children’s Hospital has been awarded a total of more than $36 million in research grants through the American Recovery and Reinvestment Act, commonly referred to as the stimulus package, signed into law last February by President Barack Obama. The grants will fund 62 research projects aimed at better identification, prevention and treatment of life-threatening diseases. The largest grant totals more than $10 million for research into neurodevelopmental genomics led by Hakon Hakonarson, M.D., Ph.D., director of the Center for Applied Genomics. The study involves neurocognitive/ psychiatric testing, brain imaging and epigenetic assessment of the genome of 10,000 children ages 8 to 21 in search of early signs of neuropsychiatric problems. “These results will be extremely important in identifying early signs and symptoms of depression, anxiety, schizophrenia and substance abuse so that we can develop preventive measures in the future,” Hakonarson says. Typical grants from the National Institutes of Health (NIH) provide funding over a four-year period and include the option to carry funding over to a fifth year. But the stimulus funds are a one-shot, short-term boost that lasts only two years. Mary Tomlinson, vice president of Research Administration at the Research Institute, says additional support is needed to continue programs past that point. “Hopefully we’ll get more financial support so we can continue the work,” Tomlinson says. “Funding, whether from another sponsor, NIH itself or from donors, is critical to maintaining an active research program.” n

New Space, New Possibilities, New Hope Dedication of the Ruth and Tristram Colket, Jr. Translational Research Building On June 9, a new chapter in the history of The Children’s Hospital of Philadelphia began as the Ruth and Tristram Colket, Jr. Translational Research Building was officially dedicated. More than 250 people attended the banner cutting for the 11-story, 450,000-square-foot building. The environmentally friendly structure houses high-profile, cutting-edge programs for advancing research in pediatric diseases, bringing discoveries in the lab directly to the patient’s bedside. The building is named in honor of longtime board members, friends, philanthropists and advocates Ruth M. and Tristram C. Colket, Jr. Mr. Colket has been a member of Children’s Hospital’s Board of Trustees since 1969, and is the longstanding chair of the Board’s Translational Medicine and Science Committee. The committee oversees research at Children’s Hospital that has saved lives around the world through new vaccines, improved surgical treatments and increased understanding. He says, “For every child who is cured at The Children’s Hospital of Philadelphia, there are dozens, perhaps hundreds, of researchers who devoted years to make that care possible.” Mrs. Colket joined Children’s Hospital’s board in 1990 after more than

two decades as a member of the Women’s Committee. Trained as a nurse, Mrs. Colket has done much to promote the profession at Children’s Hospital. She has called nurses the glue that holds the medical profession together, caring for children around the clock, treating and reassuring at the same time. “This facility provides a new, customdesigned setting to advance our already robust research to the next level,” says Stephen B. Burke, chairman of the Board of Trustees of Children’s Hospital. “We are building more than glass and steel; we are building 21st-century healthcare for children worldwide.” n

Top right: Ruth and Tristram Colket get help from their grandchildren cutting the ribbon. Top left: from left, Stephen B. Burke, chairman of the Board of Trustees; Steven M. Altschuler, M.D., CHOP CEO; Ruth M. and Tristram C. Colket, Jr. Bottom left: from left, John M. Maris, M.D., director of the Center for Childhood Cancer Research; patient Corey Haas, who was cured of congenital blindness at CHOP, with his parents Ethan and Nancy; Katherine A. High, M.D., director of the Center for Cellular and Molecular Therapeutics, who leads the blindness research team; and Philip R. Johnson Jr., M.D., executive vice president and chief scientific officer. Children’s View

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Have You Got Our Number? Do you have 1-800-222-1222 programmed into your phone and posted on your fridge? It’s the toll-free number to reach your local Poison Control Center. The Children’s Hospital of Philadelphia has housed the center, which covers Southeastern Pennsylvania and Delaware, for the past 16 years. The 18 pharmacists, nurses and doctors on staff, working around the clock, handle more than 200,000 calls each year, more than half of which are about children younger than 6. Every dollar spent on a Poison Control Center saves $7 in healthcare costs, according to studies. That’s because in most cases, a trip to the doctor or emergency room isn’t necessary. Instead, worried callers are calmed and advised by professionals, who then often call back over several hours to make sure everything is OK. The Poison Control Center at CHOP is one of 60 in the nation. Last year, there were 62. Though the centers save the healthcare system money, their funding has declined. CHOP helps fund the local center, along with state and federal monies. Donations help keep the center open. Visit www.poisoncontrol.chop.edu and click on “Support the Center” for more information. n

Dangerous Look-alikes: Many common chemicals and cleaners look like food or drink and are packaged similarly. Be aware of these similarities. Keep all chemicals and cleaners in a safe place. To avoid mix-ups, don’t store chemicals or cleaners near food. Be careful not to confuse: • tiki-torch oil and apple juice • windshield-washer fluid and kids’ “blueberry” punch • antifreeze and lemon-lime sports drink • powdered cleanser canister and Parmesan cheese container • pills and candy

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Tips to Prevent Household Poisoning •

Keep medicines out of sight, out of reach and locked. Allison Muller, who has a doctorate in pharmacy, is a director of the Poison Control Center at CHOP and a mother of two young children, has hers on top of an armoire, in a toolbox with a luggage lock on it.

• Purses often hold a trove of potentially dangerous items. Keep them out of reach. Same goes for visitors’ handbags. •

Don’t think child-resistant caps make medicine bottles safe. Kids figure them out all the time; just ask the Poison Control Center staff.

•

Don’t keep chemicals or cleaners under the kitchen sink or in an easy-to-reach place in the garage. Muller has hers in a locked closet, and she has two locks on the garage door.

•

Keep medicines and cleaners in their original containers (important information is on those containers) — and never store chemicals in empty food containers. Adults and kids have made the mistake of drinking something poisonous because it was in a food container!

• Never call medicine candy or say it tastes like candy. Don’t use the two words together. • Use as many “green” products as possible. Household cleaners are among the top five substances involved in poisonings. •

Don’t panic if your child ingests silica gel (from shoes or purses) or a small amount of household bleach or diaper- rash ointment. They are usually not poisonous. Stay calm and call the Poison Control Center.

Injury to Children Can Cause Post-Traumatic Stress in Parents A recently published study at Children’s Hospital found that, one month after their child’s injury, 37 percent of parents experienced symptoms of post-traumatic stress disorder (PTSD), including reliving the incident, avoiding reminders of the incident, and increased anxiety or jumpiness. Six months later, 15 percent of parents still had significant symptoms of PTSD. Researchers from CHOP’s Center for Injury Research and Prevention followed 334 parents of children who had suffered road traffic injuries requiring care at Children’s Hospital. It’s the first study in the field to evaluate subjects for both acute trauma symptoms one month after the injury and longer-lasting trauma symptoms six months later. “I think the take-home message is that even while they’re helping their child recover, it’s very important for parents to take care of themselves as well,” says Nancy Kassam-Adams, Ph.D., the study’s lead author and director of the behavioral science core at the center. To help families understand and deal with their reactions to their child’s injury,

CHOP on U.S.News’ Elite Honor Roll! The Children’s Hospital of Philadelphia has once again been recognized for excellence in all pediatric specialties by U.S.News & World Report in its annual Best Children’s Hospitals survey. Your support helps CHOP maintain its leadership status. Out of 170 children’s hospitals contacted for the survey, CHOP was one of only eight named to the elite 2010 – 2011 Best Children’s Hospitals Honor Roll. CHOP was ranked No. 1, No. 2 or No. 3 in nine out of 10 specialties. CHOP ranked first in Pulmonology, Diabetes-Endocrine Disorders and Neonatal Care; second in Cancer, Urology, Heart-Heart Surgery and Gastroenterology; third in Orthopaedics and Neurology-Neurosurgery; and sixth in Kidney. Philanthropy is critical to CHOP’s ability to provide the world’s best pediatric healthcare by bringing unsurpassed expertise to the treatment of every childhood illness, no matter how rare or common. Go to www.usnews.com/childrenshospitals to see details of the methodology and the full ranking chart. n

CHOP created AfterTheInjury.org, a parent-friendly website that includes tips from experts and other parents to help parents and their kids achieve a full physical and emotional recovery. “It’s a really wonderful tool that

parents can access any time,” KassamAdams says. “The focus is to help parents help their kids, but we think it can be helpful to parents as well.” The study appeared in the Journal of Traumatic Stress. n

Youth Walk Broadens Appeal of Healthy Kids Day The second annual Healthy Kids Day added a new feature to its lineup of educational and fun activities for kids. This year, more than 300 children in sixth to 12th grades participated in a fitness walk around the Mann Center for the Performing Arts the morning of Healthy Kids Day. Kicker David Akers and tackle Winston Justice from the Philadelphia Eagles led the kids in warm-up exercises before they set out on either a 1.5-mile or a 3-mile course. Eagles cheerleaders led the way. The afternoon event, sponsored by the Walmart Foundation for the second year (see story on Page 17), offered families healthy food from ARAMARK, tons of health-related information and plenty of fun activities for the kids. Hip Hop Harry and the Laurie Berkner Band performed. For more information and photos, go to www.chop.edu/healthykidsday. n

An Eagles cheerleader leads the way past the finish line.

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Sharing CHOP’s Expertise with the World Global Health Seeks to Support Developing Countries Today with Sustainable Models for Tomorrow In the time it takes to read this sentence, two children will have died of a preventable disease. Every day, nearly 25,000 children in third-world countries die of curable sicknesses: malaria, diarrhea, tuberculosis, malnutrition. “That’s our call to action,” says Rodney Finalle, M.D., director of the Global Health Department at The Children’s Hospital of Philadelphia. “So many children dying every day from preventable diseases is what propels our programs.” Global Health’s blend of directly caring for children in global partner communities, the Dominican Republic and Botswana, and building capacity for local healthcare providers there, is saving children today — and tomorrow. Children’s Hospital has long been the leader in pediatric healthcare, and now is assuming that role in global health, too. “As the leading children’s hospital, we strive to globally reach

out and be a leader in children’s health,” says Geri O’Hare, C.R.N.P., who has supported Global Health in the Dominican Republic. “CHOP’s borders are wide and encompass many kids.” The approach in each country is different because the needs are different. But the mantra is always collaboration. “We work together; it’s the best way,” says Lara Antkowiak, M.D., M.Ed. One of two inaugural recipients of the David N. Pincus Global Health Fellowship, she lives and works in Consuelo, Dominican Republic. “It makes sense for our partners to tell us what they need and how we can help. If we came and did for them, we might feel good about ourselves because we saw 100 patients. But it isn’t lasting. It’s our collaborations with members of the community that make a difference in the end.” The Pincus Fellowship makes Children’s Hospital the first pediatric institution that offers a fellowship in Global Health. In addition to Antkowiak, Henry Welch, M.D., is based in Botswana. They stay two years, working

This page: The children pictured represent the many who have benefited from the care provided by CHOP’s Global Health Department. Top right: The CHOP team working in a clinic in the Dominican Republic. Photos are by CHOP’s Global Health team members who visited in November 2009. 8

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Global Health: Many Ways to Reach Out The Global Health Department collaborates with its partner communities through: n Global Health Allies Program:

alongside local health providers, treating children, training health promoters, doing research and building relationships that will have a lasting impact in those two countries — and beyond. The goal is to create sustainable models that can be replicated in other countries. David Pincus, whose gift funded the fellowship for the first four years, had worked with organizations that sent doctors to developing countries for a month. “By the time they got a feel for the place, it was time to come home,” he says. “Children’s Hospital understands that to have a bigger impact, doctors need to stay long enough to get to know people,” he says. “By offering two-year fellowships, it is the only hospital doing pediatric global health this way. Everyone else will want to copy our model.”

Four Hours Away, a World Apart Global Health reached out first to the Dominican Republic, making its inaugural trip to Consuelo in 2005. Twice a year since, teams of 10 to 12 physicians, nurses and physical and occupational therapists take a four-hour flight and for two weeks work alongside local health providers to hold clinics in the bateyes, the

poor villages at the edges of sugarcane fields. For most, it is their first exposure to severe poverty, where clean water is scarce and indoor plumbing rare. Where homes are shacks made of cinder blocks, corrugated metal and cardboard. Where life is, as Antkowiak says, a “daily sacrifice to survive.” Team members practice with little equipment and no lab. They may not know the language or the culture. “It’s also about learning cultural humility,” O’Hare says, “and learning how you can access the other person’s viewpoint.” Each morning the team sets up in a school, church or other small community area. It’s usually cramped, with no electricity or running water. All patients are measured and weighed, assessed for malnutrition and treated for illness. The team keeps meticulous records to monitor illnesses and patterns. Parents receive medicine and health advice. Children who meet the World Health Organization (WHO) criteria for malnutrition are enrolled in a nutrition program. Families are given food packages each month, and the children’s progress is tracked. continued >

CHOP employees become allies by volunteering to go on a medical trip to the Dominican Republic or Botswana. The program underwrites their travel and living expenses, and pays their salaries while they’re away. The experience provides critically needed expertise to specific initiatives while enhancing the clinicians’ skills and ability to relate to patients and families at CHOP when they return. The opportunity to participate is a powerful recruiting and retention tool. n Annual Pediatric Global Health Symposium: This gathering shines

a spotlight on global health issues and offers an opportunity to share ideas and innovative solutions to the health challenges facing children around the globe. The 2010 symposium, “Impact of Disasters on the Health of Children,” will be Sept. 29. n Visiting International Partners:

CHOP brings pediatricians and nurses from our partner countries and collaborating organizations to Philadelphia to learn, firsthand, about a particular clinical or research area. Practitioners can enhance their skills and knowledge, which will help them improve the quality of care when they return home. This program needs funding to continue. n Resident rotations: CHOP residents can choose to spend one of their off-campus rotations in the Dominican Republic or Botswana. They treat children in clinics and hospitals and undertake a scholarly project, gaining a perspective that may well influence their entire careers. continued >

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Staving off Malnutrition, One Mother at a Time Lara Antkowiak, M.D., M.Ed., the David N. Pincus Global Health Fellow living in Consuelo, Dominican Republic, learned about that country’s beliefs surrounding breast-feeding through experience. Antkowiak gave birth to her first child, Lucia, in December, and it didn’t take long for the locals to give her their opinions. “When people saw me breast-feeding, they opened up to me like they hadn’t before,” she says. “There are very strong beliefs here.” Some of them are: •

Breast milk doesn’t provide enough nutrition so mothers need to start to supplement with formula when the baby is 2 to 3 months old.

•

Be careful about spilling breast milk; if ants touch breast milk, it can make your milk supply dry up.

•

If you’re sick, you can’t breast-feed, or if your child is sick, you should switch to formula.

•

If you’re pregnant, you shouldn’t breast-feed.

•

It’s bad for the baby if the mother eats at the same time she’s breast-feeding. “I had people come up to me and tell me to stop eating,” Antkowiak says.

While these ideas seem a little unusual to us, they are woven into the culture in the Dominican Republic, which has one of the lowest rates anywhere in the world of exclusive breast-feeding for six months (the World Health Organization recommendation): 9 percent. Research shows that six months of breast-feeding lowers rates of childhood mortality, diarrhea, ear infections, respiratory infections and malnutrition. With one in six children younger than age 6 in her pediatric practice in the Dominican Republic suffering from malnutrition, it struck Antkowiak that raising

the breast-feeding rate in the barrios, the poor urban neighborhoods, would have a widespread impact on the health of the children who live there. And if the attitude toward breast-feeding were to change, the impact would be felt for generations. She has proposed a research project, working in partnership with health promoters, to educate mothers-tobe about the benefits of breast-feeding exclusively for six months. She will measure the current rate of breast-feeding in four barrios — two that have health promoters to educate the families and two without health promoters as a control. The health promoters will learn the basics of breastfeeding, the WHO guidelines, the science behind them and practical skills to help moms follow recommendations. Then, the health promoters will make home visits before a baby is born, when the baby first gets home and again at one- and then two-week intervals to offer information and help. A breast-feeding group for moms will be started to give mothers peer support and to offer guidance. After a year, the populations will be measured again, comparing the barrios where there was educational intervention to the control barrios. “It’s not going to be easy,” says Antkowiak. “But the solution is to work through the health promoters, who have the trust of the women in the community.” n Left: Lara Antkowiak, M.D., M.Ed., working in a clinic. Above: Antkowiak visits with an expectant mother in her Dominican Republic barrio.

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> continued from Page 11

One day is set aside for a workshop for health promoters, women and men who work in the bateyes and barrios, the poor urban neighborhoods, spreading information about better health practices and following up with families. Wendy Hemme, R.N., an Emergency Department nurse who went to the Dominican Republic in 2009, gave a presentation on asthma. “The health promoters were so enthusiastic, asking a lot of questions,” she says. “The workshop is one of the greatest parts of any trip. We don’t just go to the country twice a year. We give the local people tools to take back to their communities. That’s what lasts.” CHOP benefits because team members sharpen their skills and broaden their worldview, enhancing their care of patients and families. “After you come back, you practice differently,” says clinical nurse specialist Karen Anderson, M.S.N., A.P.R.N., B.C. “When you care for a patient, you don’t make assumptions. It becomes easier to make a meaningful connection. You become a better clinician.” Antkowiak, as a continuous presence in the Dominican Republic, develops deeper relationships with patients, families and local health workers. Most days she sees patients in Niños Primero en Salud, the first collaborative year-round children’s health center in Consuelo for families in the

barrios. With support from the Women’s Committee of The Children’s Hospital of Philadelphia, the clinic opened in 2009, hiring a physician, nurse and coordinator from the Dominican Republic and putting an emphasis on disease prevention and wellness. Antkowiak also travels an hour to the Columbia Family AIDS Clinic in nearby La Romana to treat children with HIV/ AIDS. And she works on research projects and visits families in their homes — her favorite piece of her practice. “In the U.S., physicians don’t go to patients’ homes anymore. Here, we do it all the time, and it’s so meaningful,” she says. “If I see someone in clinic and they don’t come back, I go with Ramona (a Niños Primero nurse), walk through the neighborhood and knock on the door. You see the dirt floor and tin roof. You see the mother is taking care of five cousins. They always pull out the one chair they have and insist I sit. The neighbors come by. The kids play outside. It opens your eyes to the reality that you may not be cognizant of in the clinic.” Through it all, she partners with local providers, building trust. “Ultimately you want to provide better care in a sustainable way,” she says. “With the nutrition program, for example, we don’t only hand out food. We educate the health promoters and help families continued >

> continued from Page 11 n Research: Whether it is

determining the effectiveness of the nutrition program in the Dominican Republic or developing sensitive ways to tell South African teenagers that they have HIV, CHOP is working to find the best ways to combat many healthrelated issues facing children in the developing world. n Fellows: The generosity of donor

David Pincus established the David N. Pincus Global Health Fellowship, which funds two, two-year fellowships, one in Consuelo, Dominican Republic, and one in Botswana and South Africa. Both fellows actively treat HIV/AIDS patients as CHOP expands its partnerships to include two facilities that Pincus had long supported: Sparrow Village in Soweto, South Africa, and the Family AIDS Clinic in La Romana, Dominican Republic. n Partners Scholarship: The goal is to offer international colleagues a two-year training program at one of our Global Health partner sites. The scholars would undergo an educational program and contribute to the incountry programs already in progress, adding capacity and depth of services. This program needs funding to launch. n Niños Primero en Salud:

This flagship CHOP Global Health program houses community outreach, education of health promoters, an integrated nutrition program, immunizations and free health services for the most underserved children in the Dominican Republic. This unique, multidisciplinary, collaborative program has already integrated itself into the community in its first year of operation. With an emphasis on partnering with local professionals and community health workers, it holds the greatest promise for substantive change at the community level. In order to grow and enhance services, the program needs financial support.

A workshop, led by Carla Campbell, M.D., and the CHOP team, for Dominican Republic health promoters.

To learn more, go to www.chop.edu/ globalhealth. n Children’s Children’sView View11 9

“At the end of the day, it’s about how you deliver care and build capacity to help the children.” – Rodney Finalle, M.D., director of the Global Health Department > continued from Page 13

learn how to use the little money they have to provide more nutritious meals. It’s amazing; over time they come to trust you and believe in you.”

Same Goals, Different Approach While the overarching goals in Africa are the same as in the Dominican Republic, Botswana has a better healthcare infrastructure to deliver care. However, the country faces challenges improving quality of care. That’s where Global Health is focused. Instead of sending a team to care for patients, CHOP sends two or three experts to assess current practices and recommend improvements in areas such as nutrition, infection control in hospitals and adolescent health issues. CHOP doctors and nurses are in Botswana for a few weeks to get to know their local counterparts, observe how things are done and share best practices. Once they return to Philadelphia, the relationship continues through conference calls to talk through problems and offer advice. Shirley Huang, M.D., medical director of CHOP’s Healthy Weight Program, spent time in the Nyangabgwe Hospital in Francistown, observing the treatment for children with severe malnutrition. As she and the local doctors discussed the hospital’s otherwise effective feeding program, they uncovered a gap. They became aware that after being in the hospital for several months while their child was treated, families left immediately

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after discharge, skipping the visit with the dietitian to pick up food and supplements to take home. “Families were so eager to get home, they were sneaking out and missing this critical part of treatment,” Huang says. “I tried to help the staff see their own areas for improvement and come up with their own solutions.” The Botswana trips are planned with CHOP pediatrician Andrew Steenhoff, M.D., an infectious disease specialist in Gaborone, the capital city, who is the lead physician of CHOP’s African Program.

In 2008, Steenhoff became the first pediatrician to join the BotswanaUPenn Partnership, a collaboration of the government of Botswana, the University of Botswana, the University of Pennsylvania and, now, Children’s Hospital. When not consulting on pediatric patients in public hospitals, Steenhoff works tirelessly on changing the big picture — expanding the knowledge and skills of local medical staff and improving the standard of care for children with infectious diseases, especially tuberculosis, his research area of emphasis. “Right now we’re revising the tuberculosis prevention guidelines. The goal is to use the best evidence available to decide how to give prophylactic medicine to kids who’ve been exposed to TB,” says Steenhoff, who is on the Botswana Ministry of Health advisory committee on HIV and TB. “We hope to prevent a good number of cases.” In addition to having the secondhighest rate of HIV infection in the world (17.1 percent of the population), Botswana has one of the highest rates of TB. About 10 percent of the country’s diagnosed TB cases are in children under 15, and

Pincus Fellow Henry Welch, M.D., examines a patient in Botswana.

Steenhoff believes that the actual number is larger given the difficulties of diagnosing TB in children. During his visits to hospitals and clinics, Steenhoff encourages tried-and-tested ways to diagnose TB, as well as introducing more novel techniques. “But I can’t just go in and tell them what to do,” he says. “The key is to be as culturally appropriate as possible, to be respectful of what people are doing. My approach is to see what’s going on, reinforce good care, and, if I see practices that are wrong, to tactfully offer advice.” Steenhoff supervises Welch, who is in his second year as a Pincus Fellow. Welch splits his time between the Francistown hospital and the villages and rural areas nearby, and Sparrow Village, an AIDS hospice and orphanage in Soweto, South Africa. Francistown is five hours from Gaborone, and Soweto is eight hours south of there. “It’s heartbreaking some days because, by the time many of the patients arrive at the hospital, there is not much we can do,” Welch says. “Other days, I’m so optimistic. I can see real progress that has come out of our collaboration.”

A Model Worth Replicating Global health is distinct from other medical specialties. In some medical institutions, the focus is on public health. Others highlight infectious or tropical diseases, or disaster and trauma response. “For Children’s Hospital, it’s all those and more,” says Finalle. “It is collaboration across disciplines, and it requires community engagement and advocacy.” It also requires generosity. Programs are funded through donors such as David Pincus, the Women’s Committee and others who have attended a Global Health fundraiser. Proceeds from the 2010 Daisy Day Luncheon (see story on Page 22) went to support Global Health. To do more, the department needs more help from you. “It’s not about finding a cure,” says Finalle. “With our partners, we know how to treat diarrhea, TB, malaria, parasites. With our partners, we bring science to the real world and make it meaningful in a culturally effective way. At the end of the day, it’s about how you deliver care and build capacity to help the children.” n

Keeping Botswana Physicians at Home Until a year ago, Botswana didn’t have a medical school. Aspiring doctors went to other countries for medical school and residencies. After six to eight years away, only one-third returned to Botswana to practice, and fewer stayed to continue practicing. Of the 800 or so doctors treating 1.9 million people, the vast majority were foreigners. The Children’s Hospital of Philadelphia is among a handful of hospitals and medical schools collaborating to increase the number of home-grown Botswana physicians and, in particular, Botswana-trained pediatricians. The hope is that the doctors will remain in their country, building capacity to care for their own people. The University of Botswana (UB) opened a medical school in August 2009 with 36 students. Andrew Steenhoff, M.D., a CHOP pediatrician who is CHOP’s lead physician of programs in Africa for the Global Health Department, and associate country director, research director and lead pediatrician for the BotswanaUPenn Partnership, works closely with the department of pediatrics at the new medical school. “There will never be enough money to bring enough foreign doctors

to developing countries,” Steenhoff says. “It’s a far more sustainable solution to build upon the existing resources incountry by expanding local educational and training opportunities.” Steenhoff, a native of South Africa who completed a fellowship in infectious diseases at CHOP, is assisting with Botswana’s first pediatric residency program, which began in January 2010 with three residents. He is working with UB’s pediatric faculty to train physicians from Botswana who went to medical school elsewhere and have returned home for their residencies. He, along with Global Health Director Rodney Finalle, M.D., has shared educational materials created and refined at CHOP to help UB and Princess Marina Hospital in Gaborone develop its pediatric residency program. There are many potential ways for CHOP’s and Botswana’s medical schools and pediatric residency programs to collaborate. “We’re looking for more ways to support them and for how to do it most effectively,” Steenhoff says. n Above: CHOP’s Andrew Steenhoff, M.D., (center) assesses a child’s chest X-ray for tuberculosis on a teaching round in the Princess Marina Hospital in Botswana.

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DonorFocus

Center for Pediatric Inflammatory Bowel Disease

Ann and Richard Frankel

Giving Back: ‘The Right Thing to Do’

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Their motivation for great generosity: a heartfelt wish that no child would have to experience the pain they know too well. Ann and Richard Frankel have pledged $1.5 million to the Center for Pediatric Inflammatory Bowel Disease at The Children’s Hospital of Philadelphia, one of the largest philanthropic donations in the center’s history. The funds, in the form of an estate gift, will support research into treatments and cures for inflammatory bowel diseases (IBD), including Crohn’s disease and ulcerative colitis. The couple knows the devastating effects these diseases can have; Mrs. Frankel was diagnosed with Crohn’s disease 35 years ago. “This disease has been so incredibly difficult in my life, and it’s extremely painful to watch children go through the same thing,” she says. “If there’s anything we can do to prevent that and to make their lives better, then that’s the thing to do.” The Pediatric IBD Center at CHOP is the largest such program in the world, treating approximately 1,800 patients each year from the Philadelphia region and from around the globe. The team includes 21 physicians, many of whom are renowned leaders in IBD research. Most recently, researchers here led an international study that identified five new genes that raise the risk of early-onset IBD. Eventually these findings could help physicians diagnose patients by genetic profile and offer treatments customized to each patient’s genetic makeup, with the most benefit and the fewest possible side effects.

CorporateSpotlight “Ann and Richard Frankel have a longstanding commitment to supporting IBD research, and really are partners in our success,” says David A. Piccoli, M.D., chief of the Division of Gastroenterology, Hepatology and Nutrition. “Through their leadership and support, and that of other like-minded donors, we have been able to develop new clinical programs and perform research that has already dramatically improved the lives of children with IBD.” In his 25 years as a gastroenterologist at CHOP, Piccoli has seen extraordinary advancements in IBD care. During his fellowship at CHOP, there were essentially three medications to treat Crohn’s disease and ulcerative colitis, and each had significant potential side effects. Now, there are dozens of better and safer medications, leading to a dramatically improved quality of life for IBD patients. In addition, IBD research has grown tremendously in the past few years, opening up many pathways to explore future therapies. The need is great: Every year, approximately 30,000 new cases of IBD are diagnosed in the United States, in an increasingly younger population. IBD is the fastestgrowing disease in the pediatric community. “We now see so many young children with IBD,” says Robert N. Baldassano, M.D., director of the Center for Pediatric Inflammatory Bowel Disease at CHOP. “Our goal is to prevent long-term complications until we can provide a cure for these diseases.” The Frankels are longtime supporters of Children’s Hospital through the Auto Dealers CARing for Kids Foundation, The Children’s Hospital of Philadelphia Golf Classic and the Daisy Day Luncheon. They became familiar with Drs. Piccoli and Baldassano through their involvement in the local chapter of the Crohn’s and Colitis Foundation. Their decision to make a generous donation came from their deep concern for the increasing numbers of children being diagnosed with IBD and their conviction that Children’s Hospital is offering the best care and supporting the best research. “It became very evident that Dr. Piccoli, Dr. Baldassano and the entire team were very aggressive in their approach to providing the best care and funding the best research in the pediatric arena,” Mr. Frankel says. “It’s nice to be able to support worthy causes, but it’s even better if those funds can go to support a program that is on the cutting edge and is going to accomplish the most with those dollars. The Children’s Hospital of Philadelphia is clearly at the top of its field. It is a world-class organization in everything it does.” “We don’t have children,” Mrs. Frankel says. “We don’t have that specific connection of being parents or grandparents. We just think this is the right thing to do.” n

Philadelphia Eagles kicker David Akers signs an autograph at Healthy Kids Day 2010.

Walmart: Always There for Children’s Hospital One of the nation’s top children’s hospitals has a true friend in the nation’s largest retailer. For 27 years, Wal-Mart Stores Inc. has been one of the top corporate supporters of The Children’s Hospital of Philadelphia. Last year alone, the 74 Walmart and Sam’s Club stores in an 18-county region surrounding Philadelphia raised $508,000 for CHOP during the six-week Children’s Miracle Network campaign. They asked every customer coming through their checkout lines to donate money, held hot dog and pretzel sales, put out coin-collection canisters, and more. “The Walmart Foundation has made an effort to champion organizations that make a difference here in Philadelphia,” says Hank Mullany, executive vice president and president of Walmart North. “CHOP positively impacts the lives of local children and their families every day, and we’re happy to play a small role in supporting their efforts.” In recognition of this support, a reception desk at one of the Hospital entrances was recently dedicated as the Walmart and Sam’s Club Reception Desk. “You name it, they do it to raise money for Children’s Miracle Network at CHOP,” says Robin Valentino, director, Children’s Miracle Network at CHOP. Walmart extended another helping hand to CHOP last year by sponsoring the inaugural Healthy Kids Day. The company made the free community event possible by contributing more than $150,000, as well as water and other items. At the event, held at the Mann Center for the Performing Arts, experts from CHOP shared information about nutrition, vaccines, managing asthma, injury prevention and more. The day featured games, sports demonstrations, healthy meals and a concert. Walmart sponsored Healthy Kids Day again this year. n

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September

Sept. 10 – 11 98.1 WOGL Loves Our Kids Radiothon Since 2001, the annual 98.1 WOGL Loves Our Kids Radiothon has raised close to $4.3 million for patients at CHOP through Children’s Miracle Network. Tune in to hear amazing stories of hope and courage. For information, go to www.wogl.com. Sept. 15 Miracle Jeans Day Go casual for CHOP’s kids! Your employees can support Children’s Miracle Network by purchasing a Miracle Jeans Day button, sticker or lapel pin. On Sept. 15, all employees who wear the button get to wear jeans to work to show support for CHOP! For information or to sign up, visit www.MiracleJeansDay.com. Sept. 25 April’s Run This 5K run/walk in Marlton Park in Pilesgrove, N.J., benefits families of long-term patients in the Pediatric Intensive Care Unit in memory of April Pettit. The event also includes family-friendly activities along with plenty of good food, beverages and snacks. For information, contact Debbie and Larry Pettit at 856-769-1850 or visit aprilsrun.com.

Sept. 26 2010 Four Seasons Parkway Run & Walk Join us for the 2010 Four Seasons Parkway Run & Walk benefiting cancer research. Registration opens at 7 a.m. at the Four Seasons Hotel Philadelphia. The 5K Run and 2K Walk begin at 8:30 a.m. Together, we can make a difference for kids with cancer. For information, contact Michelle Kerr at 267-426-5600 or events@email.chop.edu, or go to www.parkwayrun.com.

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September 2010 – January 2011

October

Oct. 3 The Children’s Hospital of Philadelphia Buddy Walk® and Family Fun Day Join us at Villanova University Stadium for Children’s Hospital’s Buddy Walk® and Family Fun Day. In addition to the walk, the day will be filled with great activities for the whole family. In seven years, the Buddy Walk® has raised more than $1.7 million for CHOP’s Trisomy 21 (Down syndrome) Program. For information, contact Rebecca J. Elias at 267-426-56489 or elias@email.chop.edu, or go to www.giftofchildhood.org/buddywalk. Oct. 3 Big Hearts to Little Hearts Walk The Fourth Annual Big Hearts to Little Hearts Walk will be held on the beautiful Belmar, N.J., boardwalk. Come walk 3 miles with more than 20 pediatric heart patients and their families and friends. For information or to register, call 732-773-4463 or e-mail bigheartstolittlehearts@yahoo.com. Oct. 9 Walk for Hope The second annual Walk for Hope will take place at Veterans Park in Hamilton, N.J. Proceeds will benefit the Center for Pediatric Inflammatory Bowel Disease at CHOP. For information, contact Barbara Kuleba at rkeeb916@aol.com. Oct. 10 Ride Ataxia Philly Join cyclists of all levels for the second annual Ride Ataxia Philly in Limerick Community Park, Royersford, Pa. Ride Ataxia Philly benefits the Friedreich’s Ataxia Research Alliance and CHOP’s Friedreich’s Ataxia Program. There will be 10-, 25- and 50-mile routes on scenic country roads, fun family activities, and food from sponsor Outback Steakhouse. Learn more at www.rideataxia.org/philly or e-mail RAPhilly@rideataxia.org.

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Evening of Hope Nov. 13

The 2010 Evening of Hope, held at the Baptist Temple, will raise money and awareness for CHOP’s Center for IBD. This year’s event features Tony® and Emmy® Award-winning performer Mandy Patinkin. For information, contact Lori Busch at 267-426-6465 or busch@email.chop.edu, or visit www.giftofchildhood.org/ eveningofhope. Oct. 20 Monte Carlo Night Marriott’s Philadelphia Business Council presents the Fifth Annual Monte Carlo Night to benefit Children’s Miracle Network at CHOP. Join us for great food, casino-style games and a silent auction. For information, contact Robin Valentino at 215-590-6805 or valentinor@email.chop.edu. Oct. 21 “All In” for Kids Poker Tournament The “All In” for Kids Poker Tournament, presented by Joel and Jami Friedman, at the Mandarin Oriental Hotel in New York City, will use the rules of a No Limit Hold ’Em charity tournament. All proceeds go to CHOP’s Center for Fetal Diagnosis and Treatment. For information, contact Lori Busch at 267-426-6465 or busch@email.chop.edu, or visit www.allinforkids.org.

UpcomingEvents November

Nov. 6 and 7 Thanksgiving in the Country Thanksgiving in the Country is a nonprofit house tour that benefits the Facial Reconstruction Unit at Children’s Hospital. The two-day event includes house tours, a luncheon, crafting demonstrations and a complimentary tea. For information, visit www.thanksgivinginthecountry.com or e-mail laura@chamberswalk.com. Nov. 7 Team Kortney Rose ING NYC Marathon Secure a highly coveted spot in the ING New York City Marathon and help fight brain tumors! Join the Kortney Rose Foundation, an official Bronze Level marathon charity. Raise $2,500 for KRF, which has raised more than $260,000 for CHOP, and get a race entry. Have a spot? Join Team Kortney by raising $1,000. For information, call 732-222-1491 or go to www.thekortneyrosefoundation.org. Nov. 20 Daisy Day Shopping Day With more than 25 vendors selling everything from handbags to stationery to fine jewelry, there will be something for everyone at the Sixth Annual Daisy Day Shopping Day. Twenty-five percent of all sales will benefit Children’s Hospital. For information, contact Sonia Ocasio at 267-426-6477 or events@email.chop.edu.

December Dec. 2 and 3 Women’s Committee Holiday Boutique The 2010 Women’s Committee of CHOP Holiday Boutique will be held at the Merion Cricket Club in Haverford, Pa. The Preview Party is on Dec. 2, and the Boutique opens to everyone on Dec. 3. Vendors will donate 25 percent of sales to the Hospital. For information, contact Rebecca J. Elias at 267-426-6489 or elias@email.chop.edu.

Event

Beneficiary

Date

Location

Children’s Miracle Network

9/10-11

CHOP

Miracle Jeans Day

Children’s Miracle Network

9/15

April’s Run

Pediatric Intensive Care Unit

9/25

Marlton Park Pilesgrove, N.J.

2010 Four Seasons Parkway Run & Walk

The Cancer Center

9/26

Four Seasons Hotel Philadelphia

The Children’s Hospital of Philadelphia Buddy Walk® and Family Fun Day

Trisomy 21 Program (Down syndrome)

10/3

Villanova University Stadium Villanova, Pa.

98.1 WOGL Loves Our Kids Radiothon

Big Hearts to Little Cardiac Center 10/3 Hearts Walk

Belmar, N.J.

Walk for Hope

Center for Pediatric 10/9 Inflammatory Bowel Disease

Veterans Park Hamilton, N.J.

Ride Ataxia Philly

Friedreich’s Ataxia Program

10/10

Limerick Community Park Royersford, Pa.

Monte Carlo Night

Children’s Miracle Network

10/20

Philadelphia Downtown Marriott Courtyard

“All In” for Kids Poker Tournament

Center for Fetal Diagnosis and Treatment

10/21

Mandarin Oriental Hotel New York, N.Y.

Thanksgiving in the Country

Facial Reconstruction Unit

11/6-7

Sergeantsville, N.J.

Team Kortney Rose in the ING NYC Marathon

Brain Tumor Research

11/7

New York, N.Y.

Evening of Hope

Center for Pediatric 11/13 Inflammatory Bowel Disease

Daisy Day Shopping Day

Patient Care Programs

11/20

TBD

Women’s Committee Holiday Boutique

Patient Care Programs

12/2-3

Merion Cricket Club Haverford, Pa.

2011 Philadelphia Patient Care Programs 1/28/2011 International Auto Show Black Tie Tailgate Preview Gala

The Baptist Temple Philadelphia, Pa.

Pennsylvania Convention Center Philadelphia, Pa.

For a current events list and details on upcoming events, visit GiftofChildhood.org.

Interested in having your own event to raise funds for CHOP? Register your event with The Children’s Hospital of Philadelphia Foundation at GiftofChildhood.org or contact Tess Boyle 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. n Children’s View

V.I.P. Volunteers in Philanthropy CHOP. Also shown are Scott Lustgarten, Dom Conicelli and Kevin Mazzucola. CARing for Kids began its partnership with Children’s Hospital in 1986 and has donated more than $4.3 million to critical programs at CHOP since then.

s Philadelphia International Auto Show Black Tie Tailgate Preview Gala More than 3,000 people dined on food from Stephen STARR Events and danced to music from Eddie Bruce Music amid the cars at the Philadelphia International Auto Show Black Tie Tailgate Preview Gala on Jan. 29. Co-chairs of the Preview Gala were CHOP CEO Steven M. Altschuler, M.D., and his wife, Robin, and Dom and Karen Conicelli. The Auto Dealers CARing for Kids Foundation, one of CHOP’s most dedicated and generous supporters, presented Altschuler, (above, left) with the final check, which completed the Foundation’s pledge of $2 million to

Lion’s Den Children’s Hospital recently celebrated the opening of the Asplundh Family Foundation Lion’s Den. This space, on 5 West of the Main Building, is dedicated exclusively to teenage patients, offering a much-needed place for teens to play video games and connect online with other patients in the other nine Lion’s Dens across the country. CHOP’s Lion’s Den was made possible with support from the Asplundh Foundation. On hand at the opening were Brent and Kelly Asplundh and their daughter Caroline; Pat LaFontaine, founder, Companions in Courage Foundation; and Jim Johnson, executive director, Companions in Courage Foundation. Children’s Hospital Golf Classic The Children’s Hospital of Philadelphia Golf Classic, hosted by the Lynn

Founders Society Gathers at Merion Members of the Founders Society at Children’s Hospital gathered on May 6 at historic Merion Golf Club with host Clark Hooper Baruch, chair of the Founders Society and Hospital trustee. The reception honored those who have contributed more than $1,000 to the Hospital in recent fiscal years. The evening featured remarks by Baruch and CHOP CEO Steven M. Altschuler, M.D., and culminated with the inspiring story of Jack Rubin, now 3 years old, as told by his parents. n Top: Loyal 25-year donors, Lisa (left) and Dick Carr, with Clark Hooper Baruch. Bottom: Chad, Jack and Kristy Rubin, featured speakers at the Founders Society reception.

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Saligman League, was held May 10 at Huntingdon Valley Country Club. The Classic raised more than $230,000 for patient care programs throughout CHOP, including Camp Get-A-Well-A. Guests also heard Tanner Townsend, a CHOP cardiac patient, tell his story. Miriam Quigley Dance-a-Thon Nearly 1,000 families danced away an April Saturday afternoon and raised $50,000 for pediatric brain tumor research at the Fifth Annual Miriam Quigley Dance-a-Thon at St. Katharine of Siena Church in Wayne, Pa. Heart Ball January’s Heart Ball continued the Big Hearts to Little Hearts tradition of celebrating the relationship between congenital heart disease families and CHOP. This year’s event featured a special video produced by Hollywood filmmaker Christopher Surgent and was highlighted by an extremely generous donation to the cause from Goldman Sachs and several of its employees.

Chairman’s Circle Members Recognized

s Make Some Noise On Jan. 23, the Cure Kids Cancer Foundation honored CHOP physicians John Maris, M.D., and John Dormans, M.D., at a black-tie dinner with live and silent auctions. Malcolm Sutherland- Foggio (pictured here with mom Julie Sutherland, Maris and oncologist Richard Womer, M.D.) returned to CHOP to present the event proceeds to the Cancer Center. More than $100,000 will go to cancer research.

s Raphaely Dedication On May 3, a plaque was unveiled in honor of Russell Raphaely, M.D., who was director of CHOP’s Pediatric Intensive Care Unit from 1972-1996. The honor was made possible by a gift from an anonymous donor. Guests attended a luncheon and heard moving remarks from a patient family whose daughter received exceptional care from Raphaely. Next to the plaque are, from left: Wilson J.C. Braun III, Marianne Raphaely, Mary C. Braun, Courtney Braun, Raphaely, Bernard S. Kaplan, M.B., B.Ch., chief, Division of Nephrology, Wilson J.C. Braun Jr. and CHOP CEO Steven M. Altschuler.

The inaugural Chairman’s Circle Dinner, hosted by chairman of CHOP’s Board of Trustees Stephen B. Burke, was held June 23 at the Four Seasons Hotel Philadelphia. The Chairman’s Circle honors the Hospital’s most generous donors, those who have given $1 million or more in cumulative gifts. Each member was recognized at the event and received a token of appreciation. Philanthropy from members of this group has had a profound impact on making The Children’s Hospital of Philadelphia the finest pediatric healthcare and research network in the world. n

Top, from left: David Oberkircher, trustee George Lemmon Jr. and Stephen Burke, chairman, Board of Trustees. Bottom: Trustees James McCabe and Fred Biesecker.

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V.I.P. Volunteers in Philanthropy

s Childhood Friends Third Annual Wine Tasting On April 29, the Childhood Friends Third Annual Wine Tasting was held at the new Daniel Stern restaurant R2L. More than 100 guests enjoyed wines from three wineries. Hosted and supported by Philadelphia magazine and the Pennsylvania Liquor Control Board, the event raised $28,000 for research, education and patient care programs at CHOP.

Ninth Annual Philadelphia Wine Festival More than 200 wine makers were represented at the Ninth Annual Philadelphia Wine Festival, held May 8 at the Philadelphia Marriott Downtown. The event, hosted by Philadelphia magazine and the Pennsylvania Liquor Control Board, supports research, education and patient care programs at CHOP. National Pancake Day On Feb. 23, pancake lovers united to celebrate National Pancake Day at IHOP. Participating locations offered free short stacks, and in return, guests were asked to consider making a donation to Children’s Miracle Network. Thanks to the generosity of the many IHOP diners, more than $24,000 was raised for Children’s Miracle Network at Children’s Hospital.

Gelatin Olympics On June 9, 200 supporters of Children’s Seashore House at The Children’s Hospital of Philadelphia took the ultimate plunge into 700 gallons of strawberry gelatin at the 17th Annual Gelatin Olympics! The event raised $25,000. Second Annual Big Hearts to Little Hearts Golf Outing On April 26, golfers from New Jersey and Pennsylvania came together in Blue Bell, Pa., to raise approximately $20,000 for Big Hearts to Little Hearts, which supports the Cardiac Center at CHOP. Council Rock High School North Rock-A-Thon Students at Council Rock High School North stayed up all night on March 26 … but they weren’t studying. They were

54th Annual Daisy Day® Luncheon and Fashion Show The 54th Annual Daisy Day® Luncheon and Fashion Show, the largest daytime fundraising event in Philadelphia, ushered in spring in high style again with featured designer Oscar de la Renta’s Fall 2010 collection. This year, more than $1.1 million was raised to benefit Global Health. A heartfelt thank you to our loyal and generous sponsors: Honorary Chair – David Pincus; Diamond Sponsors – Leonard and Madlyn Abramson Family Foundation, Anonymous, and Marsha and Jeffrey Perelman; Platinum Sponsors – William and Donna Acquavella, Leonard and Lynne Barrack, The Conwell Partners, Dorman Products, The Honickman Family, Evie and Ronald A. Krancer, Mr. and Mrs. James A. Nolen IV, and Mr. and Mrs. John Thalheimer; Gold Sponsors – Johnson & Johnson, Debbie and Rick Stamm, Nancy and Richard Wolfson Charitable Foundation, and Jane and Mickey Zolot. n

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From left: Rodney Finalle, M.D., director, Global Health Department; Steven M. Altschuler, M.D., CHOP CEO; Nancy Wolfson, event chair; David Pincus, Daisy Day 2010 Honorary Chair; and his wife, Geraldine Pincus.

dancing — all night — to raise funds for the Cancer Center. Students also played games and enjoyed food and time with friends while raising $10,000 for CHOP. Bryce’s Bridge of Hope Wine Tasting Braving a snowy Jan. 30, a sell-out crowd attended the first Bryce’s Bridge of Hope Wine Tasting at the Riverwinds Restaurant in West Deptford, N.J. More than $14,000 was raised to benefit pediatric brain tumor research.

Huddle Up for Autism Raises $80,000 for Autism Research On April 11, more than 4,000 people attended Huddle Up for Autism at Lincoln Financial Field. The day was presented by the Philadelphia Eagles and benefited the Center for Autism Research at Children’s Hospital. This free event raised awareness about autism, and featured Eagles players, stadium tours, Swoop the mascot and games. It raised nearly $80,000 for autism research. n

Addison’s Ball On May 15, Addison’s Ball attendees came together to celebrate Addison Birney with food, music, dancing, raffles and a great silent auction. The event raised $5,000 to support the Cardiac Center at CHOP. Philadelphia KiXX Jersey Auction The Philadelphia KiXX have been proud sponsors of Children’s Miracle Network at CHOP for many years. On Feb. 20, the players took their jerseys off their backs to be auctioned, with the nearly $4,000 in proceeds benefiting Children’s Miracle Network at Children’s Hospital. David Akers Kicking in Spring On June 2, David Akers and friends kicked in spring with a night filled with great food, fun and entertainment. Joe Conklin performed a special comedy show, and the attendees were able to laugh and network throughout the evening. Proceeds from the event benefited the David Akers Kicks for Kids Foundation, which supports David’s Locker, a fund that helps families during their time at Children’s Hospital. Peyton’s Promise Supporters walked or ran in beautiful Spring Lake, N.J., on May 15 to raise money for Peyton’s Promise, which supports congenital diaphragmatic hernia research and awareness at CHOP.

Attendees at Huddle Up for Autism had the opportunity to meet Eagles players (top) and get up close and personal with Swoop (above).

Children’s View

ViewPoint

Sister Alice Strogen, S.S.J.

‘I’m supposed to be here’

Above: Sister Alice Strogen, S.S.J., meets with Ryan Pulcini following his heart transplant. Opposite page: Sister Alice was a comfort to Michelle Burns while her son, Jaxon, 14 weeks, was recovering in the Pediatric Intensive Care Unit.

Children’s View

Some 25 years ago, Sister Alice Strogen, S.S.J., was teaching high school biology in Bangor, Pa., when she was invited to The Children’s Hospital of Philadelphia for a symposium for teachers of students with cancer. As she listened to two of CHOP’s most dynamic oncologists, Audrey Evans, M.D., and Anna Meadows, M.D., Sister Alice was changed. “Something happened to my heart that day,” she says. “I felt a draw.” At first, she volunteered summers through the closest Catholic parish, St. Agatha-St. James Church. Then the parish hired her, and she spent most of her time at CHOP. Eventually, CHOP put her on staff as a chaplain. Her longevity makes it possible for her to greet families like the Pulcinis with a bond that goes back 18 years, when their son Ryan was a cardiac patient as an infant with a severe heart defect. “He got his heart transplant a week ago after waiting here in the Hospital for seven months,” Sister Alice says jubilantly as she walks into his room. Ryan, exhausted, gives her a weak but genuine smile. Ryan had a setback two days after the transplant, when his condition was so tenuous Sister Alice rushed to CHOP after a 4 a.m. call from his parents, Kelly and Camillo. Ryan stabilized but still has major hurdles to overcome. Through it all, Sister Alice will be there, offering support and prayers. “We’ve had many long nights here over the years, and Sister Alice has sat with us,” Kelly says. Sister Alice ministers to any family “no matter their ‘brand’” in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), the Cancer Center and on the fourth floor of the Main Building. She visits Catholic families that request her and she goes anywhere else she’s needed. One April day, she started her morning by picking up the prayer requests from the Schlimm Center for Prayer and Reflection, a nondenominational space on the first floor of the Hospital. The chaplains’ office is right there, and the two full-time day chaplains pray together for the families and staff members who leave requests. Sister Alice scans the surgery schedule and the list of newly admitted patients, looking for families she’s helped before. She sees one she knows well and she’s off to the Pediatric Intensive Care Unit on the seventh floor, looking up Bridget Barton, whose 4-year-old, Paige, had been admitted the day before with respiratory problems. Bridget’s family lived down the street from the Strogen home in Roxborough, Pa., where Sister Alice grew up before she joined the Sisters of St. Joseph. Paige has

multiple health issues. Sister Alice prays for Paige, Bridget, their family, and the doctors and other clinicians who care for Paige. “You can see how Paige responds to her mother,” Sister Alice says. “There is such love between them. Bridget sees her role to be a strong advocate for Paige, and she is.” Sister Alice makes another stop, seeing 14-week-old Jaxon Burns. His mother, Michelle, is all smiles. “We may get to go home on Wednesday,” she reports. Jaxon is recovering from severe complications from the H1N1 flu that at one point required ECMO (extracorporeal membrane oxygenation), a cardiopulmonary bypass technique that provides long-term respiratory and cardiac support. Sister Alice was at CHOP when the first patients were saved with ECMO, and she bolsters parents’ spirits with happy stories of children who fully recovered. “I’ll be back to see you before you go,” Sister Alice promises.

“When I’m with them, I hope they realize that God is also with them in these horrible times — and in celebratory times, too.” – Sister Alice Strogen, S.S.J.

It’s on to the third floor to see a 16-year-old who was recently diagnosed with an especially aggressive form of brain cancer. But the door is closed. Sister Alice will return a couple of hours later to speak quietly with the teen’s mother, arrange for a priest to give Holy Communion the next day and hug the mother when she breaks down. Sister Alice makes a pass through the Garbose Family Special Delivery Unit, the first-ever birth facility in a children’s hospital for mothers carrying babies with known birth defects, to check the week’s scheduled births. Some families want their newborns baptized right away, so she likes to be ready. For Catholic families, she performs baptisms in emergencies; she performs the sacrament for babies of all faiths and sends the necessary paperwork to the families’ home churches. “Baptisms are so uplifting for the whole family — and me,” she says. Then it’s on to the fourth floor to check on a New Jersey couple waiting while their child is in surgery. Sometimes she’ll sit with anxious parents for hours. “If you’re willing to sit with them, you don’t need profound words,” she says. “When I’m with them, I hope they realize that God is also with them in these horrible times — and in celebratory times, too.” Sister Alice swings by the Alex Scott Day Hospital on the fifth floor of the Richard D. Wood Pediatric Ambulatory Care Center,

adjacent to the Main Building. It’s a slow period, with only a handful of the recliners filled with patients receiving chemotherapy. “I continue to provide support to families who come here week after week,” she says. “I get to know them when the child is an inpatient, so I stay in touch to see how things are going.” Next, Sister Alice visits the N/IICU on the second floor, offering a word of support to the father of a 10-week-old and then stopping by the room of an identical twin being soothed by her grandmother. The babies’ mother is with the other twin, who was strong enough to go home a week earlier. Sister Alice listens patiently as the grandmother questions why her granddaughters had to suffer and fight so hard to survive. Their encounter ends with a prayer for strength and healing. Wherever she goes, Sister Alice is greeted warmly by the staff. She takes time to say a friendly word to those who work for Environmental and Linen Services, cleaning rooms and changing sheets. “I’m very conscious of them,” she says. “Take the onco floor. They don’t just empty the trash and clean. They interact with the children and their families every day. They want to make a difference, and they do.” A few more stops, including a couple more visits with Ryan in the Evelyn and Daniel M. Tabas Cardiac Intensive Care Unit, and it’s 3:30 p.m. Sister Alice has been on almost every floor and in every corner of the Hospital, without a break for lunch or coffee. “With all the walking, I should be a size 2,” she jokes. There are no urgent calls this day; some sadness, but no sorrow. There is joy, in the face of Jaxon’s mom, and so much hope. “I’ve seen so many incredible things happen under this roof,” Sister Alice says. “I feel God leads us to where we’re supposed to be. For me, it’s here.” n

Children’s View

PediatricResearch PolicyLab Turning Research into Improved Healthcare Policy A few years ago, CHOP primary care pediatrician David Rubin, M.D., M.S.C.E., saw Michael, a bright 4-year-old who was living within the foster care system. In his short life, Michael had already lived in several different homes. His foster parents told Rubin the boy was being disruptive at his day care center and was taking a combination of three psychotropic drugs to treat his behavioral problems. What most likely was normal behavior for a child coping with the instability of foster care was being managed by pharmaceuticals whose long-term health impact on a developing brain is still unknown. As both a trained physician and epidemiologist who researches child abuse and child welfare policy, Rubin knew that Michael’s case was part of a growing problem in foster care systems. Rubin later co-founded PolicyLab, a new Center of Emphasis of the CHOP Research Institute that focuses on bridging the gap between research evidence and child health policy. Along with PolicyLab Senior Co-director Kathleen Noonan, J.D., Rubin has recently shed light on data showing that psychotropic drugs are prescribed to foster care children three times more often than to children outside the foster care system. “Instead of addressing underlying factors — like placement instability and lack of support for foster parents — as a society, we are just snowing these kids out with powerful drugs,” says Rubin. Rubin and Noonan are now working with the city of Philadelphia to implement effective and sustainable programs to improve outcomes for children in foster care. One PolicyLab initiative, funded by the Annie E. Casey Foundation, helps foster parents of children with disruptive behaviors to improve their parenting skills. While Medicaid pays for psychotropic drug prescriptions, it does not always fund parenting-skills training, which research shows reduces disruptive behavior and helps children thrive. The William Penn Foundation has also funded PolicyLab in two collaborative projects: one with Philadelphia to improve foster care placement stability through kinship care and another with the School District of Philadelphia to ensure children who change schools because of a new foster home placement have personalized educational plans that follow them. At its core, PolicyLab is a research center, but with a practical and innovative approach. Every day, hundreds of CHOP clinicians like Rubin witness the harm children suffer from publicly supported child health and welfare programs that are out of tune with family and community needs and are not informed by emerging, or even established, research. PolicyLab also supports the development of a healthcare analytics unit, in conjunction with the CHOP Center for Pediatric Clinical Effectiveness, to greatly advance the way large datasets of 26

Children’s View

David Rubin, M.D., M.S.C.E., and Kathleen Noonan, J.D.

population health statistics are analyzed, whether the data comes from hospitals, insurers or the government. “We strive to create novel opportunities to advance the wellbeing of children, diminish health disparities and use healthcare resources effectively,” says Noonan. Other PolicyLab investigators include Susmita Pati, M.D., M.P.H., who studies healthcare access policies and programs; Chris Feudtner, M.D., Ph.D., M.P.H., who studies policies supporting caregivers of children with complex conditions; James Guevara, M.D., M.P.H., and Marsha Gerdes, Ph.D., who lead projects in behavioral health family and parenting supports; and Cynthia Johnson Mollen, M.D., who studies sexually transmitted diseases and pregnancy education and prevention among teens. To reach its goals of informing policy change, PolicyLab uses a mix of communication strategies. The center’s “Evidence to Action” briefs summarize its research studies and recommendations and are shared with key stakeholders in child-health policy circles. PolicyLab will hold its first convening on foster care policy this fall in Washington, D.C. Go to www.research.chop.edu/policylab to find PolicyLab articles and policy recommendations. To help PolicyLab spread the word, The Pew Charitable Trusts provided a four-year, $1 million grant in 2009. Other sponsors include the Commonwealth Fund and the Stoneleigh Center. n

Contents

Invest

Fall 2010 3

The View from Here

CHOP News Roundup

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10 Cover Story Sharing CHOP’s Expertise with the World 16 Donor Focus

Center for Pediatric Inflammatory Bowel Disease

September 2010 – January 2011

18 View Calendar

Charitable Gift Annuity

20 Volunteers in Philanthropy 24 ViewPoint

Sister Alice Strogen, S.S.J.

26 Pediatric Research

PolicyLab

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