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A Report on Your Investment in Hope
Hope Cause for
Robyn, 9, traveled to CHOP from her home near London for treatment for neuroblastoma.
A message from
Cancer Center Leadership Dear Friends, It has been another incredible year for the Cancer Center at The Children’s Hospital of Philadelphia. Our researchers have made tremendous strides in improving treatments for a number of childhood cancers, and many generous individuals and organizations have joined with us in advancing their work and the superior care children receive here every day. The news that modified T-cells had completely eliminated leukemia in Emily Whitehead — the first child to receive the experimental immunotherapy — was seemingly everywhere at the end of 2012. Although this treatment is very new and is still being evaluated, it shows great potential and is a testament to the exceptional quality of cancer care and research at Children’s Hospital. In this report, you will find stories about this groundbreaking therapy and progress made against neuroblastoma, another devastating childhood cancer. Both of these breakthroughs were supported in part by donors like you. Philanthropy is essential to every aspect of the Cancer Center, and this report shares many examples of the different ways kind-hearted people make a difference. It highlights, for example, parents raising considerable funds for research and a woman honoring her mother with a gift to provide patients with educational and psychosocial support, so we can treat the whole child — physically, developmentally and emotionally.
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Thousands of donors have made personal investments in the work that happens at the Cancer Center; though we can only mention some of you in these reports, you should know that everyone at CHOP — including caregivers, researchers, support staff, patients and families — recognizes and appreciates the value of so many people giving what they can, gifts large and small, to help the children here. Hopefully this report will convey just how much you are making possible at Children’s Hospital. Thank you for your contributions to our vital work. Sincerely,
Frank Balis, M.D. Interim Chief, Division of Oncology The Louis and Amelia Canuso Family Endowed Chair for Clinical Research in Oncology
John Maris, M.D. Director, Center for Childhood Cancer Research The Giulio D’Angio Endowed Chair in Neuroblastoma Research
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Dream Team to Fight Toughest Childhood Cancers CHOP-led Team Wins First Pediatric Stand Up To Cancer Grant
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ollowing a lengthy and highly competitive application process, a multinational coalition of cancer researchers led by the Cancer Center at The Children’s Hospital of Philadelphia won a $14.5 million “Dream Team” grant from Stand Up To Cancer and the St. Baldrick’s Foundation. The money will fund research led by John Maris, M.D., director of the Center for Childhood Cancer Research at CHOP, over the next four years as he and his team use new technologies and approaches in medical research to create innovative treatments for particularly threatening pediatric cancers. The title of the project, “Immunogenomics to Create New Therapies for High-Risk Childhood Cancers,” reflects the melding of two powerful disciplines that have historically functioned independently: immunotherapeutics and genomics. The goal is to rapidly translate promising basic research into transformative, targeted treatments that will improve cure rates in children’s cancer. “The motivation for creating this collaborative research project is the realization that completely new strategies are needed if we are to have curative therapies for all childhood cancers,” said Maris. “Our team hopes to rapidly develop more precise and effective treatments based on the unique characteristics of each child’s tumor, focusing on the genetic changes that make the cancer cells different from the rest of the child’s body.” Immunotherapeutics focuses on developing
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treatments that harness the body’s own immune system to fight disease. It has received attention lately because of exciting success treating leukemia. Genomics, the field that analyzes the broad landscape and fine details of the genetic code in DNA, reveals potential targets for disease treatments. Recent research in genomics, said Maris, has shown that pediatric cancers are fundamentally different from adult cancers, making them less susceptible to drugs used on those adult cases. Instead of trying to treat childhood cancer in the same way, therefore, this research will exploit the unique feature of molecules on cell surfaces of childhood cancer cells that are not present on normal cells and thus offer targets for treatments employing bioengineered agents working through the immune system.
neuroblastomas (which affect the peripheral nervous system) and sarcomas (tumors of bone and other tissue). The team includes researchers from seven institutions. The team is also bolstered by several patient advocates, including longtime CHOP supporters Jay Scott and Liz Scott of the Alex’s Lemonade Stand Foundation.
In transforming this scientific knowledge into treatments, the team will take a three-step approach. First, researchers will discover cellsurface molecules offering promising targets in high-risk children’s cancers. Second, they will create immunotherapy-based proteins to attack those molecules. The third step is to carry out multi-institutional clinical trials of these treatments in children.
Maris draws on the internationally prominent expertise of Stephan A. Grupp, M.D., Ph.D., and Tom Curran, Ph.D., to lead the CHOP-based research programs. Grupp has developed the first highly effective childhood cancer immunotherapy, in collaboration with Carl H. June, M.D., of the Perelman School of Medicine at the University of Pennsylvania (see story on page 6).
The researchers on the team have deep expertise in the most lethal pediatric cancers and will combine their talents on a sustained effort to improve cure rates for the four deadliest pediatric cancers: malignant brain tumors, high-risk leukemias,
Oncology researcher and CHOP deputy scientific director Tom Curran is a member of the Institute of Medicine and was recently named to the inaugural class of Fellows of the American Association for Cancer Research Academy. He will lead the brain
Actor Kyle MacLachlan (center in glasses) poses with, left of center, John M. Maris, M.D., and, center, Crystal L. Mackall, M.D., co-leaders of the Stand Up To Cancer – St. Baldrick’s Foundation Pediatric Cancer Dream Team, along with other team members at the American Association for Cancer Research (AACR) Annual Meeting on Sunday, April 7, 2013 in Washington, D.C.
tumor discovery efforts at CHOP, interacting closely with Maris’s own research program in neuroblastoma. CHOP will serve as the central hub for data analysis and new therapy development across the consortium. “The success of the program will ultimately be judged,” Maris said, “by the number of lives saved through our efforts.”
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Support from Every Corner for Scientists — and Second-graders Philanthropic Gifts Help CHOP Pioneer Innovative Cancer Treatment
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mily Whitehead was weeks from losing her battle with leukemia when her parents put her in the car and drove two hours to The Children’s Hospital of Philadelphia. “We knew there were things offered at CHOP that were cutting-edge — newer things that weren’t being tried anywhere else,” Emily’s mom, Kari, recalls. On April 17, 2012, the 7-year-old received an infusion of her own immune cells, re-engineered in a lab to attack cancerous cells. The experimental therapy, called CTL019 or CART19, had shown remarkable results in adult patients. Emily was the first child to be treated. The vials of cells represented years of work by a team at CHOP, led by physicianscientist Stephan Grupp, M.D., Ph.D., in collaboration with researchers at the University of Pennsylvania. Among the most important members of Grupp’s team were the philanthropists who kept the T-cell research moving forward, including Jeffrey Jay Weinberg Memorial Foundation, the W.W. Smith Charitable Trust, the Sanford Young Investigators Fund, Eagles Fly for Leukemia, Bradley’s Buddies,
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Philadelphia Triathlon, Alex’s Lemonade Stand Foundation, Dorman Products and other donors. “In 15 years at CHOP, moving this particular treatment forward, the role of philanthropy has been absolutely vital,” Grupp says. “There have been many periods when philanthropy has really kept major aspects of this research going.” CHOP scientists not infrequently face a funding gap at a crucial juncture: taking results from the lab and learning whether the therapy works in children. Federal sources, such as the National Institutes of Health, are more likely to fund basic science (laboratory science). And pharmaceutical companies will provide support in bringing a drug or other treatment to patients, once it’s proven to work.
By supporting scientists in bringing therapies to children through research trials, philanthropists help pioneer the next big breakthroughs — such as the T-cell therapy that allowed Emily to experience second grade this year as a healthy, happy child.
as of December 2012. Many more must be treated to determine the therapy’s effectiveness and to answer key questions, such as whether the cells provide long-term disease control. Grupp’s results were published in The New England Journal of Medicine in April 2013.
Three weeks after a single infusion of engineered T-cells, a test of Emily’s bone marrow showed no cancer cells. She has experienced a complete remission that has now lasted over a year. It’s a story that has garnered world-wide attention since the results were published in December. Scientists are hopeful that CTL019 will be an effective therapy for certain leukemias and lymphomas. In studies at CHOP and Penn, nine of 12 pediatric and adult patients have experienced complete remission or partial response after T-cell therapy,
Emily personifies the promise of this experimental therapy. She is at home in Central Pennsylvania, riding the school bus, making her parents laugh at dinner, and playing with her puppy, Lucy. “She is a kid who has just thrived after having the burden of her disease lifted from her,” Grupp says. “To see her go from leaving the Hospital, to starting to recover, to going to school and playing soccer and looking like every other kid is just wonderful. It’s the best thing about doing what we do.”
Emily, 7, at home with her dog, Lucy.
“In between, you have a real limitation in funding, and philanthropy is absolutely key,” Grupp says. “Many folks who want to contribute to scientific and clinical advances are interested in that spot: how do you take something out of the lab — where you now understand a new phenomenon and it’s very interesting — and get it to the point where it’s a potentially viable treatment and might be of interest to a drug company?”
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Raising Funds, Raising Awareness Beyond Cancer Beyond Cancer is an event held each fall for kids and families who are being treated for cancer or were treated in the past. The September 2012 event drew more than 400 people, including patients, families and staff. Top: Members of the Saint Joseph’s University women’s basketball team volunteered, helping out with spin art, cotton candy and much more. Middle: Speakers (from left) included Beverly Lange, M.D., Rachel Kovach, patient, Cindy Schmus, R.N., M.S.N., C.R.N.P., Naomi Balamuth, M.D., and Anne Reilly, M.D. Bottom: Patients and survivors wore green shirts; parents, staff and other supporters wore orange.
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Four Seasons Parkway Run & Walk Top right: The 2013 Parkway Run ambassadors, patients being treated for cancer at CHOP who helped with the event’s promotion and opening and closing ceremonies. Middle right: In its second year participating, Team Canuso enlisted over 200 runners and walkers, raising $11,000, which was in addition to the $25,000 sponsorship by Louis P. Canuso, Inc. There were 236 teams for the 2013 event, a record. Bottom right, from left: Honorary co-chair Kristen Lee, Michael Barkann, co-host Sports Radio 94 WIP and CSN Philly, John M. Maris, M.D., Frank Balis, M.D., Valerie Knight, co-host 98.1 WOGL, Brent Martin Below: More than 10,200 dedicated runners and walkers lined the Ben Franklin Parkway for the 2013 Four Seasons Parkway Run & Walk, which raised an astounding $1,032,000 for cancer research and survivorship programs at CHOP.
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Raising Funds, Raising Awareness Teen Cancer Awareness Week 2013 The Cancer Center has a wide array of services for adolescents and young adults, who are affected by disease differently and need age-specific care. Their strength was celebrated during Teen Cancer Awareness Week, the third week in January. Top: Alex Rotzal and Rachel Kovach have both blogged for philly.com to raise awareness of pediatric cancer and its effects on teenagers. Middle: Sen. Pat Toomey visited CHOP to kick off the week. He co-sponsored a congressional resolution to create the week. Here he takes part in a roundtable in the Seacrest Studios, CHOP’s in-house radio/broadcast studio. Bottom, from left: CHOP CEO Steven M. Altschuler, M.D., Liz Scott of Alex’s Lemonade Stand Foundation, Sen. Toomey, patient Alex Rotzal, Frank Balis, M.D., interim chief of the Division of Oncology at CHOP, and Lamia Barakat, Ph.D., director of Psychosocial Programs for the Cancer Center.
Teen Cancer America Roger Daltrey and Pete Townshend of The Who are the driving force behind Teen Cancer America. After over a decade working with Teenage Cancer Trust in the United Kingdom, the duo has decided to bring their passion and make a difference in the lives of teens and young adults with cancer in the United States.
Above: Roger Daltrey, musician, songwriter, actor and philanthropist best known as the founder and front man of The Who, visited Children’s Hospital in February with Bill Curbishley, manager of The Who, and other founding board members of Teen Cancer America to explore a potential partnership with the Cancer Center at CHOP.
Make-A-Wish Gift Right: CHOP patient Thomas Doherty was eligible for a gift from Make-AWish New Jersey, which sends ill children on trips or helps them fulfill wishes such as meeting a celebrity or doing a job for a day. Doherty asked that the money that would be spent on a wish for him be given instead to the Center for Childhood Cancer Research at CHOP. In the photo, he learns about some of the work his generosity is helping to support. 10
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Helping Families to Carry a Heavy Burden The GlaxoSmithKline Hope for Families Fund
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magine having a child with cancer and learning the cancer has not responded to treatment. You’re told that there is a novel treatment option, but you need to travel hundreds of miles because it is not available at your local hospital. Then imagine the financial burden that comes from weekly or monthly visits for that treatment. While the medical care is often covered by insurance, the hidden costs — airfare, gas, hotels, meals and other expenses — can make it nearly impossible for some families to get the treatment their child needs. Social workers at The Children’s Hospital of Philadelphia’s Cancer Center meet with families in this predicament every day. Years ago, there were limited resources dedicated to helping families in this way. But a partnership between CHOP and GlaxoSmithKline Foundation has changed that. In 2008, the GlaxoSmithKline Foundation created the GlaxoSmithKline Hope for Families Fund, and this past December, it made an additional $500,000 donation to the endowment. The fund, now at $2.5 million, provides assistance to qualifying families for travel and living expenses they incur while enrolled in investigational and/or novel treatments at the Cancer Center at Children’s Hospital. With the additional principal donated by the GlaxoSmithKline Foundation last year, the endowment will provide more than
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$100,000 annually to help eligible families who are struggling with financial hardship, many of whom would be unable to travel to CHOP without it. These are families who have been dealing with a cancer diagnosis for months or even years. These are parents who are no longer able to work or are working greatly reduced hours to be able to care for their sick child. These are families with medical expenses and/or debts that have been building up over time. When families learn about this fund, it is an indescribable relief. The GlaxoSmithKline Hope for Families Fund allows parents the ability to focus on the care of their child and not on the financial expenses of getting to Philadelphia. The emotional burden that is lifted with this tremendous resource is a true gift for these families. It is a gift that provides support time and time again to families, some of whom are traveling to Children’s Hospital from across the country, sometimes from across the world, every six weeks or even more frequently. The fund established by the GlaxoSmithKline Foundation has helped more than 100 families so far, and, because it is a permanent endowment, this extraordinary resource will benefit families for years to come.
Above: On March 18, CHOP celebrated the five-year anniversary of the GlaxoSmithKline Hope for Families Fund with, from left, Mary Linda Andrews, Director of Community Partnerships for GlaxoSmithKline; Paolo Paoletti, M.D., president of GlaxoSmithKline Oncology; CHOP patient Julian, 7, of Oswego, N.Y., who has stage four neuroblastoma; Matt Battin, Vice President of GlaxoSmithKline U.S. Oncology Marketing; CHOP CEO Steven M. Altschuler, M.D.; Dana Vass, M.S.W., L.S.W.; and John M. Maris, M.D. Right: This infographic helps CHOP share information about the fund through social media.
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Always Learning, Always Teaching Philanthropy Supports Oncology Nurses in Improving Care Supporting Learning: Alex’s Lemonade Stand Foundation Nursing Grants o run and play!” Most parents don’t have to think twice about encouraging kids to be active. But for a child with cancer, it’s different. Their parents have a heightened fear of injury and infection. And exercise is tough when you’re tired or in pain from treatment.
From left: Oncology nurses Lauren Haas, R.N., and Allison Rees, R.N.
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How does cancer affect activity levels? Could exercise help children and adolescents feel better during and after treatment? With an Alex’s Lemonade Stand Foundation (ALSF) Nursing Grant, a nurse practitioner at CHOP is studying these questions. “Physical activity is a powerful tool for healthy physical and psychosocial development,” says Pattianne Belfield, M.S.N., C.R.N.P., whose study includes patients ages 5 to 17. In 10 years as an oncology nurse practitioner, “it has been really obvious to me that kids who continue to play sports, who don’t drop out of gym, do better. Their ability to handle the illness is better, and they have less overall pain.” There have been thousands of studies of exercise for adult cancer patients, and exercise guidelines were published for adults in 2010. But there has been very little research about children. Belfield’s study measures physical activity over one week, following the third cycle of chemotherapy. Each child or teen wears an accelerometer, which measures motion and energy expended, and completes questionnaires to help Belfield examine the relationship between activity levels and fatigue and healthrelated quality of life. She hopes to help inform the creation of physical activity guidelines to help parents and benefit kids. CHOP nurses and nurse practitioners have received many other ALSF grants for research into family management of brain tumor survivors, decision-making regarding general
anesthesia vs. sedation, the side effects of proton therapy vs. conventional radiation therapy, and other areas. “Nurses have a presence with families that is ongoing,” says Beth Ely, Ph.D., R.N., a nurse researcher at CHOP. “They see what the challenges are through the process of treatment, because they’re the folks families reach out to. They help problem-solve a lot — what are the issues getting in the way? How can we think creatively about ways to make that better? Often their research questions come from that.” ALSF is a valued partner, providing grants and a workshop to help nurses turn ideas into studies. “There isn’t a lot of research support for nursing,” Ely says. “These projects, which can drive improvements in care for the families and kids we take care of, are happening because of the support of the Alex’s Lemonade Stand Foundation.”
“The Wolfson Fund is helping us make sure we can meet the educational needs of our patients and families,” says Sue Ogle, R.N., M.S.N., C.R.N.P., advanced practice nurse manager. “The Wolfsons’ generous support has enabled us to utilize resources, technology and tools that were not possible before.” The Cancer Center has established classes in patient-family education, ensuring families get consistent information at diagnosis. There are guides to help nurses provide families the right information at the right time, and both the inpatient floor and the outpatient clinic now have education rooms where healthcare providers can teach families. A multidisciplinary patient-family education steering committee meets regularly to assess, implement and evaluate new ideas.
uring their experience at CHOP after their daughter was diagnosed with Hodgkin lymphoma, Steven and Karen Wolfson realized what a huge role the teaching done by nurses plays in the well-being of patients and families.
A dozen handouts have been created for patient-family education, in English, Spanish and Arabic. There are information sheets and checklists for caregivers, pamphlets, and oneon-one sessions available to inpatients and outpatients. The team is currently finalizing updates to submit to the Children’s Oncology Group’s family handbook, improving education for childhood cancer patients across the country.
Nurses educate patients and families about their disease, treatment and possible side effects. They also teach caregivers how to meet the many responsibilities for cancer care at home — dispensing medication, watching for signs of infection, knowing what constitutes an emergency and more.
The Wolfson Family Fund also provided funding for an educational video that explains sperm-banking for teenage boys with cancer, since chemotherapy can damage sperm cells, causing infertility. Boys and their families can watch the video in the privacy of their home or Hospital room.
Steven and Karen, who are co-chairs of the Board of Visitors for the Cancer Center, created the Wolfson Family Fund to support these vital contributions from nurses. The fund supports standardizing teaching, ensuring a continuum in teaching from inpatient to outpatient settings, finding new ways to help nurses learn how to teach and other projects.
Such innovative, patient- and family-focused efforts are the core of patient-family education in the Cancer Center, and the Wolfson Family Fund gives nurses the resources to pursue their ideas and help their patients in the best ways they can imagine.
Supporting Teaching: Wolfson Family Fund
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Collaborating with the Best Center for Childhood Cancer Research Inaugural Symposium
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he world’s best minds in pediatric cancer gathered at CHOP in the fall of 2012 for an intense one-day exchange of ideas. Generous support from the Alex’s Lemonade Stand Foundation and a matching investment from Children’s Hospital allowed the Center for Childhood Cancer Research to host its inaugural symposium, “Recent Advances in Pediatric Translational Oncology.” A distinguished roster of pioneering researchers, from academia and industry, presented throughout the day. Speakers from CHOP included Yaël Mossé, M.D., and Stephan Grupp, M.D., Ph.D. Both have received international attention for their recent work in neuroblastoma and leukemia (see pages 6 and 22). “To do something of this scope and scale requires a major commitment,” says John Maris, M.D., director of the Center for Childhood Cancer Research. “Thanks to the generosity of Alex’s Lemonade Stand Foundation we were able to develop a world-class symposium and attract leaders in the field for a stimulating day of talks and interaction.” Also at the symposium, John Simpkins, the Cancer Center administrative director of research, received the inaugural Beverly J. Lange CCCR Service Award, established to honor an individual in the CCCR who goes above and beyond the call of duty to further enhance the program. Planning for the next symposium in 2014 is already underway.
Japkarit, 15, treated for leukemia at CHOP
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From top: John Maris, M.D., Stephan Grupp, M.D., Ph.D., and Yaël Mossé, M.D., were featured at the symposium.
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Katherine Trimnal with her mother, Demetra Janetos
Children Helped, a Mother Honored A Legacy Gift to Promote the Well-being of Children with Cancer “A generous heart and a spiritual soul” – in memory of Demetra Janetos, an endowment for psychosocial care
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atherine Trimnal’s mother used to charm children right out of their seats. Whenever she smiled at them in restaurants, they would come over to say hi to this woman they had never met. “She just had that wonderful smile and such happiness in her face every time she saw a child. I knew I had somebody special in my life when I was very young,” Trimnal says of her mother, Demetra Janetos. “She had a deep love for children, no question about it, and they knew it. They felt it, sensed it.” Trimnal knew it too. She was profoundly influenced by the love, support and example of her mother, with whom she ran their Columbia, S.C., restaurant, Seven Seas, after her father became ill, while Trimnal was in college. They worked long days and invested their proceeds until her mother became too sick and they had to sell the restaurant. Trimnal cared for her mother until her death in 2003. Though Trimnal made a fair profit in the restaurant business, she has lived frugally since; she has little patience for indulgence when so much of life is serious and requires engagement. Trimnal wanted to use some of their hardearned money to honor her mother’s memory and her heartwarming affinity with children.
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Because of her parents’ illnesses, Trimnal explored health-related causes. She and her mother had gotten to know Lamia Barakat, Ph.D., director of psychosocial services at the Cancer Center at The Children’s Hospital of Philadelphia, when she was a graduate student in Columbia. Trimnal looked up CHOP and was struck by its reputation for excellence. When Barakat told Trimnal about what she did, Trimnal knew where she would make her impact. She started with a gift to the Cancer Center’s school reintegration program. Since her Greek immigrant parents did not have the opportunity to attend school that she had, Trimnal places a high value on education. Her gift helps fund the school reintegration program of the Cancer Center, including part-time education liaison, Eileen Kenna Satullo, L.S.W. The school reintegration program includes in-hospital teaching and support for school reentry, communication with the school regarding the unique needs of children with cancer, materials/ handbooks and education programs for parents and educators regarding school reintegration, and neurocognitive assessments to guide school planning. Since the school reintegration program was formalized four years ago, Satullo has been helping children — now about 70 each year — get the best education possible during and after treatment by facilitating communication among families and schools and helping to coordinate the development of education plans.
In addition to funding the oncology school reintegration program this year, Trimnal made another gift that will allow Barakat and her successors to do even more in the future: She added Children’s Hospital to her will, committing a legacy gift of $1.25 million to create the “Katherine J. Trimnal and Demetra C. Janetos Endowed Fund for Psychosocial Services of the Cancer Center” at CHOP. It will be the first dedicated, perpetual funding stream created by philanthropy for psychosocial care in the Cancer Center. “Many families of cancer patients are resilient in the face of childhood cancer and treatment. With psychosocial services, we facilitate families’ use of positive coping, support their ability to access their own personal and community resources, and connect them to the broader cancer community,” Barakat says. “This endowment will allow us to maintain that universal level of service while bolstering family-based services and psychosocial
programs targeted for specific groups with unique needs, such as adolescents and young adults and survivors of brain tumors, in much more comprehensive and sustainable ways.” To honor her remarkable commitment, Trimnal has been welcomed into the Chairman’s Circle, which recognizes donors who have given $1 million or more in the history of their partnerships with Children’s Hospital, as well as the Lewis Society, which celebrates planned gifts such as bequests.
To learn more about joining Katherine Trimnal in making a legacy commitment of any size to the Hospital, please see the Lewis Society ad at the back of this publication or contact Tom Yates, director of planned giving, at yatestg@email.chop.edu or 267-426-6472.
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A Group of Families, a Real Difference New Association Supports Neurofibromatosis Research and Care
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ris Whalen and Trisha Budlong both have teenage sons with neurofibromatosis type 1 (NF1), one of three distinct forms of NF (NF1, NF2 and Schwannomatosis), genetic diseases that cause growths on the nervous system that can sometimes become cancerous. With other parents of NF patients treated at The Children’s Hospital of Philadelphia (CHOP), they founded the NF Family Association in 2012 to support people with NF and their families and to help raise money and awareness for CHOP’s NF programs. In the brief time since, they have raised more than $40,000. Among other fundraising activities, both Budlong and Whalen ran the Rock ‘n’ Roll Philadelphia Half Marathon with teams named for their sons, “Dashing 4 Drew” and “Miles 4 MJ.” “We found out that we could set up fundraising pages on the CHOP Foundation’s website and dedicate the funds specifically to the NF program,” says Budlong. “All we had to do was write up information to share and set goals.” The money the NF Family Association has raised so far will go towards restoring the currently vacant position of clinical coordinator, a nursing job with responsibility for matching each new NF patient to a specific doctor, helping parents navigate the system, and walking them through questions. “I feel very strongly as a parent with no medical background and limited resources that this is a way to help improve things for every person who
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walks into the NF clinic,” Budlong says. Michael Fisher, M.D., an oncologist who is the director of CHOP’s NF program, agrees with Budlong. The clinical coordinator is a priority he identified with CHOP’s NF Parent Advisory Committee, a group of 15 to 20 family members of NF patients, including both Budlong and Whalen. The committee identifies clinical needs, priorities for research, ways to strengthen services, and fundraising opportunities. When the committee members realized just how much could be accomplished with sufficient involvement, they created the NF Family Association, hoping to eventually reach all 600 to 700 families who have had children treated at CHOP for NF. After regaining the clinical coordinator, hiring a full-time research nurse would be the next priority, Fisher says. In addition to treating almost 500 kids with NF in 2012 (in more than 900 outpatient visits plus in-patient admissions for tumor treatment and more), the NF program has an active research program focused on clinical trials and other work towards new treatments, evaluation of functional outcomes following tumor treatments, and creating techniques to predict which NF tumors require treatment. “We really need the research infrastructure to support the rapid development of our clinical research in a way that supports pilot projects and things that there isn’t foundation or NIH funding for,” Fisher says. One of the common tumors children with NF develop involves the optic pathway and can cause
vision loss. However, no more than half of the tumors with the potential to do so grow to the point where vision is affected. Although it is better to treat any tumor before it grows and affects vision, it is also important not to use treatments like surgery and chemotherapy unless necessary, because of the potential side effects. NF physicians are in a difficult position of trying to predict which tumor will grow, and reserving treatment only for those tumors. Children’s Hospital has started research to learn how to predict which tumors will grow and which won’t, along with studies of how effective the treatments are at preserving sight. CHOP’s NF physicians and researchers are leaders in the field, but the research is slow, partially because funding is limited.
Connor Lavelle, 11, who has neurofibromatosis, with his mother, Kerry
Whalen, head of the NF Family Association’s fundraising committee, urges anyone who wants to support CHOP’s services and research for any reason to set up a fundraising page. “Don’t be afraid to try it,” she says. “I’m not a computer wizard, but I did it. It only takes a few minutes to set up, it makes it easy to track and thank your donors, and it’s a fun way to raise awareness. And in this economy, every dollar counts.” Set up your own page at giftofchildhood.org/fundraisingpages
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aggressive form of the disease. The findings were published in prestigious scientific journals and considered a large step forward in the quest to tailor treatments to individual genetic codes. “ALK is a gene that, when turned on, allows the tumor to grow,” says Mossé. “The discovery allowed us to begin to think of ways to turn it off.”
Edie Gilger with her mother, Emily
The ALK abnormality also occurs in some adult lung cancers and lymphomas. Manufacturers had developed a drug, crizotinib, to deactivate the gene in adults. A group of research hospitals quickly moved to bring crizotinib to children with certain difficult-to-treat cancers, starting a trial in fall of 2009, with Mossé as study leader.
Straight to the Source CHOP Leads Breakthrough in Targeted Therapy for Rare Cancers
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die Gilger had spent most of her life fighting a formidable foe: neuroblastoma. Just 18 months old, she had endured 12 rounds of chemotherapy and four surgeries to remove tumors in her stomach and chest, but the rare cancer of the nervous system kept coming back. Then Edie’s parents brought her to The Children’s Hospital of Philadelphia, where a blood test showed she had an inherited form of the disease. She was enrolled in a study of a drug designed to target the genetic abnormality driving the cancer’s growth. Edie received the drug in October 2011. Twentyeight days later, the family again traveled to Philadelphia from their home in Virginia, this time for MRI scans to show if the drug had an effect.
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“The scans took hours and hours, and I’m in the waiting room just thinking to myself, ‘Something has gone horribly wrong,’” Edie’s mom, Emily, says. She had prepared herself for the worst when Yaël Mossé, M.D., the CHOP oncologist leading the research trial, came into the room. “She said, ‘This is absolutely unbelievable, but I have taken every angle of pictures that we can, and there is nothing there,’” Emily recalls. “Edie was cancer-free.”
In February 2008, 16 months before Edie was born, a team at CHOP made a significant scientific discovery: mutations in a gene called anaplastic lymphoma kinase (ALK) are present in 14 percent of cases of high-risk neuroblastoma, the most
In spring of 2012 came the results: The drug achieved partial or complete responses, with very few side effects, for eight patients with anaplastic large cell lymphoma, three patients with inflammatory myofibroblastic tumor, and two patients with neuroblastoma. These results were published online in The Lancet Oncology in April 2013. “This is a first for children who have these rare forms of childhood cancer: to be able to take a pill twice a day, and turn off their cancer,” Mossé says. The study may herald a time in which doctors have at their disposal a large complement of very effective drugs, each designed to work on a small group of patients with a particular genetic mutation or other biological distinction. “We are entering a new era of cancer therapy, in which we use knowledge of basic biology to design very specific drugs that target cancer cells, with few side effects on healthy tissue,” Mossé says, “rather than giving drugs that are poison for all the cells in our body and aren’t selective for the cells that are causing or driving the cancer.” Mossé was named the first recipient of the James B. Nachman Junior Faculty Award in Pediatric
Oncology at the American Society of Clinical Oncology annual meeting in 2012. Not only her peers, but also the general public, recognize the work’s promise: news reports around the country featured Edie and Zach, a lymphoma patient back to riding his bike after his parents thought their battle might be lost. This spring, the active and adorable Edie — along with her parents and Mossé — were featured on CBS Sunday Morning, their story continuing to provide hope. And Mossé continues her research, striving to find better ways to attack neuroblastoma. It’s a complex puzzle. Additional research led by CHOP recently showed that there is not one but multiple gene abnormalities in most cases of high-risk neuroblastoma, challenging the ability to find “druggable targets” by DNA sequencing. “There’s been progress, but still, half of children with the aggressive form of the disease will suffer a relapse,” Mossé says. “This is what drives my work.”
Generosity Drives Genius Philanthropy was crucial to the discovery of the ALK gene and the research in which Edie and Zach participated. Supporters have included: Jocelyn and John Hillman, parents of a CHOP cancer patient; Alex’s Lemonade Stand Foundation; friends and family of CHOP patient Andrew Accardi; and the Penn-Pfizer Alliance.
Thank you.
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From Sorrow, the Gift of Joy
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t was all about the smile. One little boy’s radiant smile and, years later, the echo of that smile on the faces of so many CHOP patients.
Jeff Kahan’s journey with The Children’s Hospital of Philadelphia began when his son Joshua was treated here for leukemia. When Joshua passed away in 1997, at just under 3 years old, it could easily have ended. But in the years since, Jeff and his wife, Michelle, have maintained an extraordinary connection to CHOP — with extraordinary results. “I promised Joshua I would never let anyone forget him,” says Kahan. And he has been true to his word. Kahan founded and serves as president of the Joshua Kahan Fund, which has supported leukemia research at the Cancer Center at CHOP since 1999. In 2012, the fund finished a pledge of $1 million to create the Joshua Kahan Endowed Chair in Pediatric Leukemia Research, held by Carolyn Felix, M.D.
CHOP Prom 2012 At the CHOP prom, held every spring, CHOP inpatients dress up and dance. At left: Jeff Kahan, who founded the event — and enjoys it as much as the kids!
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Dr. Felix was one of Joshua’s physicians and to this day keeps his photo in her office. Her research is focused on the two forms of leukemia that most often strike infants and very young children: acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML). Despite great advances in cancer treatment, outcomes for some of these patients are poor. “I’ve seen too many children die from this awful disease,” she comments. Felix’s lab has been able to identify chromosomal abnormalities involved in infant leukemia and explore the biology and complex gene-enviroment interactions underlying the disease. This learning opens up promising new possibilities for drug
therapies. “With the support of Jeff and the inspiration of his son, we can imagine a future where we will know the causes of this disease, have potent drugs to treat it and eventually even prevent it.” Supporting major cancer research is crucial to the Kahans’ mission. But so is supporting fun. “The ultimate goal is a cure. But there has to be something to make a difference today,” Kahan says, adding that an important difference can be as simple as making a child smile. “Josh’s smiling face gave me the strength to be in that Hospital room with him. And that’s where our Smiles Program came from.” Kahan has introduced events like Sesame Smiles, which brings Sesame Street characters to visit children and deliver toys in the Hospital, and funded construction of spaces like the Teen “Smiles” Room, a playroom and resource center dedicated to Joshua on the Oncology inpatient unit. But perhaps most beloved is the CHOP Prom, a magical event that finds patients of all ages outfitted, embellished and coiffed to the nines (thanks to donated clothing and accessories). The kids walk the “red carpet” with as much aplomb as Oscar nominees and dance the evening away in the “ballroom” (the Hospital cafeteria). For a few hours, patients can forget why they’re here and just be kids. Kahan clearly understands how to think big — and small. “I want to find a way to cure what’s taking these children from us,” he says. “But until we can do that, I want to keep them happy.”
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Rena, 4, treated for Wilms tumor, with her mom, Jennifer
Disabling treatment resistance in neuroblastoma tumors At the same time Cookies for Kids’ Cancer funded Grupp, it also awarded a grant to Michael Hogarty, M.D., who is studying ways to address a resistance to chemotherapy developed by many neuroblastoma tumors. Hogarty is searching for supplemental interventions that will disable a chemical process by which the tumor isolates the drugs targeting it and renders them ineffective.
Moving a new drug for neuroblastoma to clinical trial
Not Your Average Bake Sale Cookies for Kids’ Cancer Supports Promising Research
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n a philanthropic partnership just more than two years old now, Cookies for Kids’ Cancer has already supported six researchers at the Cancer Center at The Children’s Hospital of Philadelphia with grants worth $600,000. The funds are supporting investigations into a variety of promising treatments and basic science studies into the origin and mechanisms of several kinds of childhood cancer. Cookies for Kids’ Cancer has always been about starting with a gigantic effort. Larry and Gretchen Witt founded the charity after their son, Liam, was diagnosed with stage 4 cancer in 2007. They held a bake sale to raise money
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for cancer research — selling 96,000 cookies in three days and raising $420,000. Since then, the Witts have brought the same passion that enabled that astounding bake sale to their philanthropy. Researchers at CHOP are matching their drive! Projects supported at Children’s Hospital by Cookies for Kids’ Cancer include:
Immunotherapy for acute lymphocytic leukemia and neuroblastoma Stephan Grupp, M.D., Ph.D., has been working to develop treatments for children that train their own T-cells to attack cancerous cells, an effort that had a major step forward in recent months. (See story on page 6.) Cookies for Kids’ Cancer funded his work two years ago.
John Maris, M.D., director of the Center for Childhood Cancer Research, won funding from Cookies for Kids’ Cancer to generate the data needed to bring a potential new neuroblastoma treatment to clinical trial. Maris’ study was to examine the effect of an existing drug on certain neuroblastoma cells which previous molecular studies indicate should be susceptible to it.
Investigating another potential target for neuroblastoma treatment Much of the work being done on targeted cancer treatments currently focuses on specific mechanisms at work in tumor generation and growth. By inhibiting these mechanisms, tumors can be hindered or eliminated with relatively little impact on surrounding healthy tissue. Maris’ study involves one such mechanism, and Cookies for Kids’ Cancer funded a similar investigation from Edward F. Attiyeh, M.D., that approaches the same goal with a different drug for a different process within the neuroblastoma tumor.
Creating cancer cells for study Although research has been promising on juvenile myelomonocytic leukemia (JMML), an aggressive, frequently fatal cancer of childhood, it has been hampered by a lack of JMML cells to study. Mitchell Weiss, M.D., Ph.D., won funding from Cookies for Kids’ Cancer to work with induced pluripotent stem cells (iPSCs) from patients with JMML to create malignant cells
Sam, 6, rhabdomyosarcoma
for molecular studies. It is hoped that those cells will enable preclinical testing of targeted therapies and that the study of patient-derived, disease-specific iPSCs will help to establish general experimental paradigms for studying and treating many forms of childhood cancer.
T-cell acute lymphoblastic leukemia (T-ALL) study Craig H. Bassing, Ph.D., received funding from Cookies for Kids’ Cancer to investigate a particular cell he believes to be a cause of T-ALL by allowing T-cells to develop genomic instability during proliferation. The funded research will examine first how that instability happens with certain cells and not others. This deeper understanding will then inform an effort to target the cells that permit instability, thereby preventing proliferation of instable, cancerous T-cells.
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Building Hope
Buerger Center: Naming & Recognition Opportunities
The Campaign for the Buerger Center for Advanced Pediatric Care
$5,000,000 n Rooftop Garden
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nyone who has been to the Hospital’s Main Campus in West Philadelphia recently has seen that the new outpatient care building, the Buerger Center for Advanced Pediatric Care, is well underway, with steel girders rising above Civic Center Boulevard. This project, the largest endeavor in CHOP’s history, was designed with the input of patients and families and consists of a 12-story outpatient care facility, five levels of underground parking to accommodate 1,500 cars, and a 2.6-acre landscaped plaza.
Through modern technology and design elements, the Buerger Center will enable CHOP to offer unparalleled outpatient care and the ideal patient experience, both medically and emotionally. Scheduled to open in 2015, the building will allow CHOP to centralize outpatient services and amenities that are currently scattered throughout the Wood Center, Children’s Seashore House and the Main Hospital. But we need help from the community. Philanthropy is critical to funding the construction, and many opportunities remain to have your generosity recognized.
With philanthropic support, this 14,000-square-foot rooftop, accessed from the sixth floor, can become a stunning green space to provide unique healing areas for physical and horticultural therapies, as well as a peaceful place of reflection. Landscape architects will create perennial gardens, a water feature and more, all safely enclosed in a high glass wall. It will be an architectural centerpiece of the building, much-loved by children, families and staff alike.
$2,000,000 n Oncology Unit Family-centered care in the Buerger Center will be offered through “neighborhoods,” groups of related specialties sharing clinical space. Neighborhoods not only will facilitate physician collaboration, but will also simplify visits for patients and their families. The Oncology and Hematology Neighborhood comprises the Alex Scott Day Hospital, Oncology, Hematology, the Infusion Pharmacy and the Phlebotomy Center. With opportunities to name departments, clinics and other spaces encompassing smaller units, your single gift benefits whole teams of clinicians and staff and serves the entire CHOP community.
$100,000 n “Wait. Play. Learn.” Areas Oval-shaped “Wait. Play. Learn.” areas embedded within the building’s waiting rooms will provide opportunities for educational play, patient and sibling distraction and stress relief.
$100,000 n Elevator Lobbies on Clinical Levels Patients will travel through the building using a central elevator bank. The light-filled elevator lobby on each floor will face the landscaped plaza below.
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$25,000 n Staff Lounges Staff lounges will provide space for clinicians and other staff to rest between patient visits and during breaks. While not open to the public, they will be highly visible to staff.
$15,000 n Roof Garden Planter Beds Individual spaces within the roof garden have been popular with early donors to the Buerger Center for honoring loved ones.
$10,000 n Patient Encounter Rooms Many clinicians and families have provided their input to help us design comfortable, functional and attractive examination, treatment, consultation and evaluation rooms.
$1,000 – $10,000 n Plaza Paving Stones Outdoor paving stones on walkways within the outdoor plaza will be inscribed with the names of donors or honorees and are a wonderful opportunity to put your mark on the building.
$500 n Inscription on Main Lobby Walkway An elegant glass-walled walkway winding from the lobby to the second floor will be inscribed with the names of donors.
The third floor of the Buerger Center will be dedicated to oncology and hematology, including the Alex Scott Day Hospital, and will have many spaces available for naming opportunities at a variety of giving levels. If you are interested in learning more about being recognized in the new building, please contact Lynn Salvo, director of development for the Cancer Center, at 267-425-2086 or salvol@email.chop.edu.
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News Briefs Hodgkin Lymphoma Research Funded
Two Cancer Center Researchers Receive Canuso Innovation Grants Since their creation in 2010, the Canuso Foundation Innovation Grants have provided critical and significant seed funding to four promising Cancer Center projects for childhood cancer research. In 2012, two researchers, Andrew Wood, M.D., (above, left), and Sarah Tasian, M.D., (above, right), split the award. Dr. Tasian will be studying potential new treatments of acute myeloid leukemia (AML), for which current chemotherapy can only cure 50 to 60 percent of children. AML relapses account for more than half of childhood leukemia-related deaths. Dr. Wood will apply whole-exome genetic sequencing to identify new hereditary neuroblastoma predisposition gene(s) in order to devise genetic screening recommendations, transform care of affected families and further our understanding of neuroblastoma’s genetic basis.
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Kim E. Nichols, M.D. (left), director of the Pediatric Hereditary Cancer Predisposition Program of the Cancer Center, has received two grants from The Adam R. Spector Foundation to investigate the genetic factors that protect against infection with Epstein-Barr Virus (EBV), a virus associated with development of several diseases, including Hodgkin lymphoma. Dr. Nichols and her team hope to develop better therapies for individuals with EBV-related cancers and possibly to enhance EBV immunity. Dr. Nichols suspects a particular genetic mutation of weakening the body’s ability to prevent EBV. The research supported by The Adam R. Spector Foundation will examine a large number of patients with EBV-related Hodgkin for genetic alterations in this gene and whether those mutations have clinical relevance for response to treatment and overall survival.
Dr. Abby Green Named Inaugural Eagles Fly for Leukemia Scholar in Pediatric Oncology Long-time Children’s Hospital partner Eagles Fly for Leukemia has made a multi-year commitment to provide a $50,000 research grant to either a postdoctoral/clinical fellow or a clinical instructor in the Cancer Center each year. Philanthropic support allows fellows and instructors to generate the research data, publications and eventual funding to launch their independent careers as cancer researchers.
Abby Green, M.D. (left), completed her residency at Children’s Hospital in 2010 and is currently a fellow in hematology/oncology and infectious diseases. Dr. Green was selected as the first Eagles Fly for Leukemia Scholar in Pediatric Oncology for her early achievement in cancer research and her planned investigation into a potential cause of myeloid leukemias, such as pediatric acute myeloid leukemia (AML). If the proteins she suspects are shown to promote the development of leukemia, it could open a new approach for AML treatment or possibly prevention.
New Tumor Classification and an Early Clinical Trial Candidate Brain tumor researchers at Children’s Hospital are investigating beginning a clinical trial of a possible medication to combat low-grade brain tumors known as grade I astrocytomas, which come about largely because of a single alteration in one gene. The gene also drives many other tumors, including adult melanomas, and CHOP research identified a melanoma drug with the potential to treat the astrocytomas. CHOP researchers are beginning to better categorize tumors based on their genetic make-up, a process that will only intensify in coming years. The astrocytoma discovery at CHOP shows that the genetic and molecular structure of a tumor allows differentiation between individuals’ tumors where before there was none, opening up the potential for particular treatments that will work only for certain tumors. Brain tumor research at Children’s Hospital is funded by the Kortney Rose Foundation, Wylie’s Day Foundation, Miriam’s Kids Research Foundation, Stanley’s Dream through the Chester County Community Foundation, the Pediatric Low Grade Astrocytoma (PLGA) Foundation, the Why Not Me? Foundation, and many others.
Lisa Haffner, R.N., earns 2013 Pitcher of Hope Award Lisa Haffner, R.N., received the 2013 Pitcher of Hope award at the Alex’s Lemonade Stand Foundation day on June 7th at Children’s Hospital. As a childhood cancer survivor, Lisa Haffner has provided countless children facing cancer with excellent medical care while also giving them, and their families, incredible compassion and empathy. To celebrate Lisa’s life and fulfill one of her all-time wishes, CHOP staff and patients performed a Flash Mob as part of the event. The Pitcher of Hope Award was established in 2007 and honors a person who has made a significant contribution to the lives of pediatric cancer patients and their families. Honorees exemplify the care that Children’s Hospital aspires to provide families through their medical journey and show compassion and dedication through their everyday actions at CHOP. Past recipients were Beverly Lange, M.D., Patricia Danz, R.N., Jean Belasco, M.D., Audrey Evans, M.D., Tom Moshang, M.D., and Pat Brophy, R.N. Above, from left: Ellen Tracy, R.N., M.S.N., C.N.A.A., Liz and Jay Scott, CHOP CEO Steven M. Altschuler, M.D., Lisa Haffner, R.N., and John Maris, M.D.
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Endowed Chairs David Lawrence Altschuler Endowed Chair in Genomics and Computational Biology Peter S. White, Ph.D. Louis and Amelia Canuso Family Endowed Chair for Clinical Research in Oncology Frank M. Balis, M.D. Giulio D’Angio Endowed Chair in Neuroblastoma Research John M. Maris, M.D. Audrey E. Evans Endowed Chair in Pediatric Oncology Garrett M. Brodeur, M.D. Joshua Kahan Endowed Chair in Pediatric Leukemia Research Carolyn A. Felix, M.D.
Courtney, 17, osteosarcoma
Yetta Deitch Novotny Endowed Chair in Pediatric Oncology Stephan Grupp, M.D., Ph.D. Richard and Sheila Sanford Endowed Chair in Pediatric Oncology Rochelle Bagatell, M.D. Hubert J.P. and Anne Faulkner Schoemaker Endowed Chair in Pediatric Neuro-Oncology Peter C. Phillips, M.D.
Board of Visitors for the Cancer Center The Board of Visitors for the Cancer Center is an appointed board of community leaders who believe in the mission of Children’s Hospital and are committed to advancing the Cancer Center’s excellence. They act as public ambassadors, participating in and leading events to raise funds and awareness for the Division of Oncology and the Center for Childhood Cancer Research. Their volunteer work fuels the Cancer Center’s mission to change the course of treatment for cancer patients, improve outcomes and find an end to this devastating disease. Karen and Steven Wolfson (co-chairs) Joan and John B. Canuso, Sr. Maureen and Joseph Canuso Nancy A. Vanore and Bruce G. Fischer Nicci and Mark Graham
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Mari and Kurt Kovach Timothy J. Maguire Pam and Tony Schneider Marjorie and Howard Silverman Patrick J. Sullivan
Endowed Funds Alex Scott Endowed Fund for Pediatric Cancer Research Connell Anastasi Memorial Fund Friends of Joe Claffey Endowed Fund GlaxoSmithKline Hope for Families Fund Jerome and Maxine Goodman Endowment Fund Grundy Family Vision for Life Cancer Research Endowment Joshua Kahan Foundation Playroom Fund Anna T. Meadows, M.D., and Alfred G. Knudson, Jr., M.D., Ph.D., Endowed Fund Pediatric Advanced Care Team Endowment Jeffrey Weinberg Pediatric Oncology Research Fund
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Let Your Legacy Be the Gift of Childhood Landon, 5, rhabdomyosarcoma
On the cover: Kaitlyn, 8, osteosarcoma
Thank You The children you see throughout this report are our
Our care, our research, our teaching. They all rely on gifts from Children’s Hospital supporters, now and in the future.
patients. It is for them, and for the many others in our care, that we relentlessly pursue the next advances in cancer treatment and research. Your support is vital to the work of the Cancer Center.
Many of the most important and enduring gifts to CHOP have been legacy gifts. Including Children’s Hospital in your will, or as a beneficiary of a retirement plan, is one of the easiest ways to invest in the health and well-being of future generations of children. These gifts won’t affect your current cash flow and may even help reduce taxes for loved ones. If you have already made a planned gift to CHOP, thank you, and please let us know. We can help you designate your gift to a specific Hospital program, and we’ll invite you to join the Lewis Society, a select group of supporters who have included Children’s Hospital in their plans. Visit us at giftofchildhood.org/plannedgiving to learn more, or contact Tom Yates, director of planned giving, at 267-426-6472 or yatestg@email.chop.edu.
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/plannedgiving
To learn more about how you can help, please contact Lynn Salvo, director of development, at 267-425-2086 or SalvoL@email.chop.edu.
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The Children’s Hospital of Philadelphia is ranked No. 1 in the nation by Parents magazine and is No. 1 on U.S.News & World Report’s 2013–2014 Honor Roll of the nation’s Best Children’s Hospitals.