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Aubrey Deno Lafayette

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HOPE HAPPENS HERE

“There can be no keener revelation of a society’s soul than the way in which it treats its children.” ~Nelson Mandela

Harli Culy Hagerstown

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Sincerely,

C H I L D R E N ’ S R I L E Y R E P O R T A N N U A L 2 0 1 2

Each year Riley Hospital for Children impacts thousands of children across our state who collectively make more than 230,000 inpatient and outpatient visits. In turn, these children’s experiences and stories inspire thousands of individuals, companies, associations and schools to provide crucial financial support through Riley Children’s Foundation. The 2012 Annual Report gives you a glimpse into that commitment by sharing the stories of three of our partners: The Kroger Co. and Glenn and Donna Scolnik. Glenn and Donna Scolnik were first introduced to Riley Hospital by their good friends Tom and Debe Dixon. The Dixons’ daughter Erin Elizabeth had heart surgery at Riley as an infant, but, tragically, she passed away when she was 12 years old. The Scolniks made their first gift to Riley in memory of Erin. Recently, they took a tour of the hospital and were inspired to learn about the important difference medical research conducted by Riley Jim Morris with physicians and scientists is making in the lives of children. The Olivia Pierce, Hobart Scolniks’ most recent gift supports research; they chose to have their gift honored by naming a room in the Newborn Intensive Care Unit for Erin Elizabeth Dixon. “Just the thought that we might be helping children down the road, that means a lot. I think it means more now because we have four grandchildren. We know that Riley is there and they would be in good hands,” said Donna. Riley is fortunate to count many individuals like the Scolniks among our partners. Often they have personal connections to Riley. But whether or not they have experienced Riley care firsthand, these individuals are keenly aware that Riley Hospital plays an essential role in the lives of Hoosier families. Riley also has an incredible group of corporate partners committed to supporting the Riley mission through their own extensive efforts. One of those partners, Kroger, was named the most generous company in America in 2011 by The Chronicle of Philanthropy with good reason. Their community engagement style is both grassroots and localized. Kroger has been involved with Riley for 16 years through John Andretti’s Race for Riley, which has raised over $2.1 million. Kroger has expanded its involvement and commitment to Riley Hospital through fundraising associated with the Kroger Super Weekend at the Brickyard 400 and in its sponsorship of the Riley Champions program. Under Kroger’s Central Division President Bob Moeder’s leadership, focused passion is the key to the company’s support of Riley Hospital and other community organizations. This August the Riley community gathered in the recently opened Simon Family Tower main lobby for a Celebration of Children. The event paid tribute to staff members, the Simon family and donors from across the state who contributed to making this facility a reality. But, most of all, the event honored children. Riley patients inspire and motivate us every day with their courage and determination. With your generous support, you honor these children. The best reputation a city and state can have is to be that special place that takes superb care of its children. In Indiana, we are committed to earning and deserving that reputation. If we do this to the absolute best of our ability, everything else will take care of itself. Thank you.

F O U N D A T I O N

Dear Friends:

Jim Morris Chairman, Board of Governors Riley Children’s Foundation 2

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HOPE HAPPENS HERE

Hunter Hay Jonesboro, Ark.

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Sincerely,

C H I L D R E N ’ S R I L E Y R E P O R T A N N U A L 2 0 1 2

This Annual Report features the story of Aubrey Deno, a vivacious little girl who beat all the odds to celebrate her third birthday this summer. Her story begins with a diagnosis of leukemia. Within 24 hours, the Riley team began her treatment and, within a few months, the preparations for a bone marrow transplant. Shortly after the transplant Aubrey’s condition deteriorated and soon she was fighting for her life. Facing less than a 1 percent chance of survival, Aubrey’s team of Riley physicians, from multiple specialties, met constantly to discuss and modify her treatment. Eventually, she was placed on defibrotide, a drug only available in clinical trial, which saved her life. When Aubrey was in the intensive care unit her Kevin O’ Keefe parents tell us that, as concerned as they were, they with Harli Culy, Hagerstown had complete confidence that her doctors, nurses and therapists were fighting every minute for their daughter’s life. The team consulted with colleagues throughout the country. They applied the latest in care and looked to the most current research to inform their decisions. When Aubrey turned the corner her parents knew that moment would never have happened if the passionate commitment of the Riley team hadn’t combined with their daughter’s indomitable spirit. Aubrey’s story is remarkable. But it is an all too familiar story at Riley. Every day the sickest children in the state come to Riley looking for hope. They find that hope because since the hospital was founded by Riley Children’s Foundation in 1924, Riley Hospital has focused on revolutionizing care and seeking cures. In the early decades, care and research primarily focused on children suffering from polio. Riley was a national leader in providing that care, even hosting President Franklin Roosevelt when a therapeutic pool for polio patients was opened at the hospital. In the 1980s, Riley Hospital pioneered the use of surfactant therapy to treat premature babies, a technique that significantly increased survival rates. More recently, Riley physician scientists conducted the only clinical trials in the world to reduce the tumors caused by Neurofibromatosis Type 1. Patients from as far away as South Korea have traveled to Riley to participate in the trial. Riley Hospital leaders have identified research as a key funding priority because they know that it is only by translating research into bedside care that children like Aubrey have a chance. Working together we look toward a day when leukemia and so many other diseases that still devastate our children will be viewed in the same way as we now consider polio—a distant memory. Thank you for your commitment to Riley and children. Your generosity ensures that hope will continue to happen for children and families at Riley Hospital.

F O U N D A T I O N

Dear Friends:

Kevin O’Keefe President and CEO Riley Children’s Foundation

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HOPE HAPPENS HERE

“It was like she was their own.” ~Lacey Deno

Saving Aubrey It takes a whole village to raise a child, goes the African proverb. Sometimes at Riley Hospital for Children at IU Health, it takes a team to save one. Such was the case with Aubrey Rae Deno, a curly-headed 3-year-old who likes to swim and play with her 5-year-old sister Jillian at home in Lafayette, Ind. In August 2010, a month after celebrating her first birthday, Aubrey was diagnosed with acute lymphoblastic leukemia (ALL). Two rounds of chemotherapy—an effective first step in 95 percent of children with ALL—had little impact. Aubrey entered a battle for her life that could only be won with the extraordinary team care of experts from every corner of Riley Hospital’s “village.” 5

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Forever grateful The Deno family stays involved with Riley Children’s Foundation to pay forward the unwavering support they received from their community, and they can’t say enough about the hospital staff’s perseverance in treating their daughter. “They fell in love with Aubrey, and we fell in love with the staff,” Lacey says. “We were family to these doctors, and Aubrey, it was like she was their own and they wanted to fight for that. It showed every single day.”

F O U N D A T I O N C H I L D R E N ’ S R I L E Y

Managing a complex case like Aubrey’s is challenging, Dr. Haut acknowledges. The transplant physicians served as her “primary” team— the clearinghouse for information and decisionmaking. Critical care physicians managed her minute-to-minute care, but other specialists came on board as needed to address problems with specific systems including kidneys, liver and breathing. One of those specialists was Riley pediatric nephrologist Jeffrey Leiser, M.D., Ph.D. “When you have a critically ill child, sometimes you have to make trade-offs,” he says. In Aubrey’s case, treating her liver was a higher priority than her kidneys because dialysis could be used to address her kidney failure. Dustin and Lacey Deno observed how their daughter’s team weighed every decision made about one aspect of her condition against how it affected another. “Each doctor brought something different to the table,” Dustin recalls. “I was blown away by how they put the pieces of this puzzle

With options and time running out, the Riley physicians decided to give Aubrey the trial medication defibrotide to treat her liver. The “miracle” that the Denos hoped for came on Lacey’s birthday, January 18, when Aubrey’s test numbers finally started to move in the right direction. “Defibrotide helped save my daughter’s liver, which saved her life,” Dustin says. Because the drug is not FDA-approved, Aubrey’s doctors obtained it through a clinical study — a huge advantage of receiving care at a research hospital. “Ultimately, her part in that study is going to lead to the FDA approval, because we’re helping to get the data they need to approve it,” says Dr. Haut. Aubrey’s condition improved so dramatically that it even impressed the team that cared for her. She went home March 14, after 111 days in Riley Hospital.

R E P O R T

An army of specialists tackles a puzzle

Research trial provides lifeline

A N N U A L

Aubrey’s Riley physicians consulted with other experts in the pediatric oncology community before deciding what to do next. “One of the reasons that advances in treating leukemia have been so dramatic is that we do it collaboratively,” says former stem cell transplant program director Paul Haut, M.D., who now serves as Riley Hospital’s chief medical officer. Aubrey received high-dose, intensive chemotherapy in preparation for a stem cell transplant on December 3, 2010. Following the transplant, which she tolerated well, the chemotherapy contributed to a severe liver complication accompanied by multi-system organ failure. At one point, her chances of survival were estimated to be 1 percent. “She was one of the sickest patients that we had in the entire hospital,” Dr. Haut recalls. “She was the type of patient that every time we made a decision, we had to ask, ‘Are we really going to make a difference?’ There just wasn’t a whole lot going right.”

together.” The team of specialists explained the situation to the Denos with “the perfect combination of being realistic and hopeful,” he adds. Dr. Leiser says communicating with parents is part of the art of medicine. “You need to take some time. You try to explain things in what you hope is a clear and straightforward fashion, and you listen to their questions. The families are able to understand some very complicated stuff. You don’t underestimate their ability to manage this. That’s a large part of patient and family-centered care.”

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A dramatic turn

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HOPE HAPPENS HERE

Grace and Angie Steinberger Fort Wayne

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F O U N D A T I O N C H I L D R E N ’ S

with Riley red wagons. General Mills invited Kroger Central Division to partner in a cereal box promotion that featured Andretti and Riley kid BJ Yoho. The Indianapolis Motor Speedway jumped on board for Kroger Super Weekend at the Brickyard. As part of Kroger’s new pact to benefit Riley Children’s Foundation, the IMS Kids Club will be renamed the Kroger Kids Club. Kroger has also signed on to sponsor the 2013 Riley Champions program. Grace Steinberger, It is a comprehensive approach Fort Wayne, with her mother, Angie to support, and it’s personal to the Steinberger family. After Grace’s initial treatment, a regular blood test showed that her cancer was in remission; however, a more sensitive minimal residual disease (MRD) test showed cancer still present. “Now, Grace is on a treatment plan to keep the cancer away for good,” what I got in return was a lot of support.” An army of specialists tackles a puzzle Angie wrote to her Kroger co-workers. “Riley did Kroger has raised more than $2.1 million for not have this test two years ago. This test is now Riley over 16 years, and this year, the partnership Managing a complex case like Aubrey’s is challengavailable because of donations from you.” is taking on new depth. “Kroger has a grassroots, ing, Dr. Haut acknowledges. The transplant physicians Grace receives ongoing treatment in Fort sleeves-rolled-up style of community engagement,” served as her “primary” team—the clearinghouse for Wayne and is doing well, Angie reports. Now in says public affairs manager John Elliott. Race car information and decision-making. Critical care physiher 14th year with Kroger, she says her employer’s driver John Andretti and Dave Wilson team up cians managed her minute-to-minute care, but other commitment to community engagement — and with Kroger each year to present a progressive specialists came on board as needed to address probits support of her own Riley kid — make her a dinner and go-kart event. Associates and lems with specific systems including kidneys, liver and proud and loyal associate. customers in 103 Central Division stores donated breathing. One of those specialists was Riley pediatric $1 or $5 through the 28th annual scan promotion nephrologist Jeffrey Leiser, M.D., Ph.D. “When you have a critically ill child, sometimes you have to make trade-offs,” he says. In Aubrey’s case, treating her liver

R I L E Y

Aubrey’s Riley physicians consulted with other When it comes to philanthropy, experts inThe theKroger pediatric oncology community Co. takes pride in before deciding what organizations to do next. “One of are the supporting that reasons that advances in treating leukemia important to both its customers have beenand so dramatic is that The we do it colits employees. $264,000 laboratively, ” says former stemfor cellRiley transplant that Kroger raised program Children’s director Paul Haut, M.D., who now Foundation this year serves as was Rileyespecially Hospital’smeaningful chief medicaltoofficer. Aubrey then received high-dose, intensive District Grocery Coordinator chemotherapy preparationof forFort a stem cell AngieinSteinberger Wayne: transplant on December 3, 2010. Following her 3-year-old daughter Grace the transplant, she tolerated the beganwhich treatment at Rileywell, Hospital chemotherapy contributed to a severe liver for Children at IU Health after complication by multi-system beingaccompanied diagnosed with leukemia in organ failure. At one point, her chances of surJuly 2011. vival were estimated to be a1%. “She was one of Angie wrote heartfelt letter the sickest patients that we had in the entire about Grace’s Riley journey, which hospital,”appeared Dr. Haut recalls. “She was the type distributed to 18 in a Kroger newsletter of patientstores that every time we made a decision,Donations we had in the South Bend district. to to ask, ‘ARiley re we really going to make a difference?’ tripled in the area. “I was a littleThere uncomfortjust wasn’t a whole lot going right.” able putting myself out there,” Angie says. “But

R E P O R T

A dramatic turn

A N N U A L

Kroger: Corporate Champion for Riley Kids

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It takes a whole village to raise a child, goes the African proverb. Sometimes at Riley Hospital for Children at IU Health, it takes a team to save one. Such was the case with Aubrey Rae Deno, a curlyheaded 3-year-old who likes to swim and play with her 5-year-old sister Jillian at home in Lafayette, Ind. In August 2010, a month after celebrating her first birthday, Aubrey was diagnosed with acute lymphoblastic leukemia (ALL). Two rounds of chemotherapy—an effective first step in 95 percent of children with ALL— had little impact. Aubrey entered a battle for her life that could only be won with the extraordinary team care of experts from every corner of Riley Hospital’s “village.”

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HOPE HAPPENS HERE

A Gift for the Future Five-month-old Jackson makes happy noises from his stroller as his grandparents, Glenn and Donna Scolnik, chat with Merv Yoder, M.D., at Riley Hospital for Children at IU Health. They are listening to the Wells Center for Pediatric Research Director describe lab research that sounds like science fiction: creating new stem cells from skin samples; growing new blood vessels in patients without that capability; curing pancreatitis by isolating and replacing cells. But the Scolniks understand that the work Dr. Yoder describes is very real — and that they are a part of making these discoveries happen for their grandson’s generation. “Your investment is the hope for all of the kids in the future — that they can and will recover,” explains Dr. Yoder. “Because of donors like you we will keep stepping up to the plate and trying to discover new treatments for the illnesses afflicting children.” The Scolniks’ first close encounter with Riley Hospital came in the 1980s, when dear friends of theirs, Tom and Debe Dixon, had a baby daughter born with a hole in her heart. Little Erin Elizabeth Dixon flourished after receiving successful heart surgery at Riley Hospital. “She was just a ball of fire,” recalls Donna. “She was loud and fun and joyful — and then she’d just sleep!” But when Erin was 12 years old, joy turned to devastation when her heart suddenly stopped. The Scolniks grieved with their friends, and made their first gift to Riley in Erin’s memory. “She had a wonderful life,” says Glenn. “It was just so short.” As years went by, the Scolniks raised their own two children, and eventually welcomed four healthy grandchildren. Glenn — a former NFL football player — built a successful career in Indianapolis, first in law, then in a private capital business. Donna fulfilled her love for children by teaching preschool and caring for

their children and grandchildren. When a friend invited them to tour Riley Hospital for Children, the Scolniks found themselves pulled to help. “They took us into the NICU, Erin Elizabeth Dixon and boy does that break your heart — these babies,” recalls Donna. “Years ago, they might not have made it.” Inspired by examples of how medical research has dramatically improved outcomes for the tiniest and sickest patients, the Scolniks made their decision: they would make a generous gift to Riley’s research programs. Glenn says once they fully understood the level of research going on at Riley, the decision felt like a no-brainer. “Riley has achieved a level of excellence that is really unsurpassed by other organizations. I travel around the country and people know Riley. It really has a great reputation.” But the Scolniks weren’t looking to build their own philanthropic reputation by making a gift — they gave humbly and quietly. When they were offered the opportunity to name a room in the new Riley NICU, set to open in the Simon Family Tower this winter, the Scolniks decided to honor someone else — Erin Elizabeth Dixon. “We didn’t want to have our name on it, and, because Erin drew us to Riley, we talked to Tom and Debe,” says Donna. “There were a lot of tears, and they said yes.” And, today, as they hear Dr. Yoder describe the research they are supporting, the Scolniks are filled with hope for a future where more young lives are spared from medical tragedies. “Just the thought that we might be helping children down the road, that means a lot,” says Donna. “I think it means more now because we have four grandchildren. We know that Riley is there and they would be in good hands.”

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A N N U A L

R E P O R T

R I L E Y

C H I L D R E N ’ S

F O U N D A T I O N

Donna and Glenn Scolnik visit NICU patient Deyvid Sanchez, Indianapolis

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HOPE HAPPENS HERE

Riley’s Global Impact Kent Robertson, M.D., with Ji Hoo Lin of South Korea

Jung Eun Song is not very comfortable speaking English, but, as she sits inside Riley Hospital, she has one message that she is careful to express very clearly: “Because of these doctors, my son is here.” Shortly after Ji Hoo Lim was born, doctors in the family’s native South Korea discovered he had neurofibromatosis. He had a tumor that was affecting his airway. His parents grew very concerned about his breathing. When they could not find any hospital in their own country that offered hope, they searched the internet and discovered Riley Hospital for Children at IU Health. They made the long and expensive trip to enroll Ji Hoo in a neurofibromatosis clinical trial at Riley involving the drug Gleevec. “He has done quite well and slowly his sleeping pattern has improved,” explains Riley oncologist/ hematologist Kent Robertson, M.D., who has been coordinating Ji Hoo’s care as a leader of Riley’s clinical neurofibromatosis trial. “Some of the obstructive qualities of this tumor are now much less. We will keep him on the drug for now and hope that this continues to get better.”

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R i l e y C h i l d r e n’s Fo u n d a t i o n

$ 22,456,651

Cash Disbursements in Support of Riley Hospital for Children

$ 22,061,827

Net Assets

$ 288,901,204

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A N N U A L

R E P O R T

Randy Caldwell, M.D., with Ozzy Reyher, Evansville

C H I L D R E N ’ S

Contributions

R I L E Y

Fiscal Year Ended June 30, 2012

F O U N D A T I O N

Financial Overview

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Total Contributions Donor Restrictions Unrestricted

$ 2,764,222

Temporarily Restricted

16,260,246

Permanently Restricted

3,432,183

Unrestricted

Permanently Restricted

Temporarily Restricted

Total Contributions $ 22,456,651

Source of Contributions Corporations

31%

Individuals

18%

Planned Giving

31%

Schools

10%

Organizations/ Foundations

Jeff Sperring, M.D., with Mi’Kwon Lee

Organizations/ Foundations

Schools

Planned Giving

Corporations Individuals

10%

“Every year, we’re seeing the need and demand for Riley’s expertise to continue to grow. The incredible support of our community partners and friends who selflessly share their time and resources with Riley helps us ensure that these children receive the care that they need.” - Jeff Sperring, M.D. President and CEO, Riley Hospital for Children at Indiana University Health

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Clinical Programs/ Patient Care/ Family Support

Other Camp Riley Museum Home

5,268,751

Chairs/Professorships/ Education

2,991,833

Clinical Programs/ Patient Care/ Family Support

4,951,256

Camp Riley

729,727

Museum Home

291,308

Other

580,494

Total $

22,061,827

Unrestricted

$61,368,563

Unrestricted Board Designated

$53,387,889

Temporarily Restricted

$78,990,045

Permanently Restricted Net Assets

R E P O R T

Net Assets By Category

$95,154,707

C H I L D R E N ’ S

Buildings and Equipment

Research

Permanently Restricted

Unrestricted

Unrestricted Board Designated

Unrestricted

A N N U A L

Chairs/Professorships/ Education

7,248,458

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Research

$

R I L E Y

Building and Equipment

F O U N D A T I O N

Cash Disbursements

Temporarily Restricted

$288,901,204

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R i l e y C h i l d r e n’s Fo u n d a t i o n

BOARD of GOVERNORS Chairman — James T. Morris Treasurer — Kristin G. Fruehwald Secretary — Francina A. Dlouhy John K. Banks Gerald L. Bepko D. Craig Brater, M.D. Karen F. Crotchfelt James R. Cumming, M.D. Donald C. Danielson Daniel F. Evans, Jr.

Anton H. George C. Perry Griffith, Jr. Rick Johnson Robert G. Jones Rebecca Kubacki Forrest D. Lucas Michael A. McRobbie George F. Rapp, M.D. Michael C. Ray Ronald F. Remak David A. Ricks

Jerry D. Semler Jacqueline Simon John T. Thompson Richard D. Waterfield Life Governors Robert R. Baxter Morris Green, M.D. Billie Lou Wood Glenn W. Irwin, Jr., M.D.* *deceased 8/23/2012

HOPE HAPPENS HERE Riley Children’s Foundation Indianapolis, IN 46204-3509 317.634.4474 877.867.4536 toll-free RileyKids.org

RileyKids.org

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2012 Riley Children's Foundation Annual Report