2014 Annual Report

Abigail Klemsz, M.D., Ph.D., with Carlos Payne, Gary, Ind.

Tate Hartzler, Russiaville, Ind.

Hope. Healing. Comfort.

These are your gifts to Riley families.

H O P E

through pediatric research seeking treatments and cures

H E A L I N G for children facing every type of illness or injury

C O M F O R T for children and families who need help

coping with the stress of a medical crisis

As you look into the eyes of the children on these pages, know that you have made a difference in their journeys.

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Joelle Turner South Bend

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Our State’s Commitment Dear Friends, Nelson Mandela once said: “There can be no keener revelation of a society’s soul than the way in which it treats its children.”

Personally, I view this statement as a challenge to which we must rise every day.

For over 90 years the people of Indiana have revealed who we are through our support of Riley Hospital for Children. In the 1920s Riley Hospital focused almost exclusively on the scourge of polio.

Riley provided a haven for those children, pioneering hydrotherapy with a pool that attracted a visit from President Franklin Delano Roosevelt. That pool was purchased with funds donated by a member of the Riley Children’s Foundation Board of Governors.

Innovation has always defined Riley Hospital and Riley Children’s Foundation. It’s experienced firsthand by patients who make over 300,000 visits annually — including 10,000 in the now fully complete Simon Family Tower.

Riley Hospital is one of the top pediatric research hospitals in the country. As you read this report, you will learn how critical research is in assisting children facing medical challenges and crises. Children’s lives can and will be changed because of the research happening at Riley Hospital.

Riley Hospital’s Dr. Raghu Mirmira, one of the leading diabetes researchers in the country, explains that philanthropy is the difference between testing ideas in the laboratory today or waiting for years to obtain federal grants. Imagine being the parents of a child with Type 1 diabetes who know their child could live 20 years less than other children because of a lack of funding.

We are all responsible for the way our society treats our children.

And we can all be part of the solution.

Earlier this year Eli Lilly and Company President and CEO John Lechleiter and I hosted an event attended by the presidents of Indiana companies and organizations. Indiana Governor Mike Pence and Mr. Leichleiter spoke to the group about the critical role of research in the economic future of Indiana. At the end of the evening I issued a challenge with which I will close this letter.

Hope can happen for our children because of our efforts and our partnerships. All of us at Riley Children’s Foundation and Riley Hospital for Children look forward to what we can accomplish working together. Please consider how you want to be part of the hope that happens at Riley Hospital.

Gratefully

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

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Macenzie Hawkins, Greenwood, Ind., with Child Life Specialist Krista Hauswald

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Your Impact Dear Friends, Last year your generosity made it possible for Riley Children’s Foundation to provide over $20 million to make a difference in the lives of children.

Here is a snapshot of some of the key areas impacted by your support. n

$8.9 million was provided for pediatric research

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$4.3 million funded buildings and equipment

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$3.3 million supported clinical programs as well as Child Life,

Social Work and Child Protection, critical programs that are not

reimbursed by insurance.

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$2.9 million funded education, including chaired professorships

and lectureships

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$1 million underwrote the costs of Camp Riley for children

with physical disabilities and the James Whitcomb Riley Museum Home

Healthcare is experiencing a time of significant transition. There are more questions than answers about what the future will hold.

But one thing we know the future must hold is sufficient funding to provide the highest level of care for children as well as increasing resources for the research that seeks to revolutionize care and discover the cures.

I would like to share two examples of the impact you have helped make possible.

Research is the number one priority at Riley Hospital and for Riley Children’s Foundation. One area of major impact is bridge funding. Bridge funds provide researchers with the means to continue critical projects during that gap between major federal grants. Without bridge funds many promising research projects would be stopped in their tracks.

Every day at Riley Hospital there are approximately 25 inpatients who cannot return to their homes for a variety of reasons, from child abuse or neglect to financial circumstances. Contributions last year helped to sustain social work positions and child protection programming to provide hope and comfort during these times of crisis.

As you read this annual report, you will learn about many other examples of how your generosity impacts children. We are deeply grateful for your commitment and your support of Indiana’s children.

With gratitude,

Kevin O’Keefe President and CEO, Riley Children’s Foundation 2 0 1 4

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HOPE Blazing a Trail Toward Breakthroughs Wes Corbin admits he sometimes feels like a 6-foot-6 guinea pig, especially when his blood’s being drawn again and again. “But I feel like I’m doing something important at the same time, that I feel honored to do,” he adds.

The 16-year-old has fought leukemia twice, and he’s

“breakthrough therapy,” which fast tracks its review to bring it more quickly to patients. The therapy genetically engineers patients’ T-cells, which are a key part of the immune system, and reintroduces them into the body to kill cancer cells. Early-stage clinical trials have been encouraging. “Wesley’s case will be one of the ones that the FDA uses to determine the future of this treatment,”

determined to put up the strongest fight possible while ensuring that something good for other kids will come

Heather says proudly.

Riley physicians like pediatric oncologist Jamie

out of it.

Renbarger, M.D., also learn from patients like Wes. Like

In August 2012, five days before the start of his

many of her colleagues at Riley Hospital, she is a scientist

freshman year at Tri-County Junior Senior High

as well as a doctor.

School in Wolcott, Ind., Wes was diagnosed with

Dr. Renbarger focuses on how medications work in

acute lymphoblastic leukemia. His treatment began

children and their variability. She is particularly interested

immediately at Riley Hospital for Children at IU

in preventing side effects like the peripheral neuropathy

Health. But when his body didn’t respond as hoped to

and foot drop that Wes experiences. “Children and

increasingly intensive chemotherapy over the next eight

parents of children with cancer are often so willing to

months, his Riley team sought out other opinions. “It

participate in research and help to make things better for

was reassuring that Riley has such a good relationship

kids in the future,” she says. “Without Wes and his family

with other children’s hospitals that they could use those

being so willing to allow us to learn from them, none of

resources,” his mother Heather Corbin says.

this would be possible.”

Wes underwent a bone marrow transplant in April

While NIH grants fund much of Dr. Renbarger’s

2013; his younger brother Ethan was the donor. Wes

research, some families also have donated to her

returned to school in November, looking forward to the

research program through Riley Children’s Foundation.

second half of his sophomore year. He even started track

“People who support research are forward-thinking

practice.

individuals,” she says. “They can clearly see that we have

But on April 30, 2014, a bone marrow biopsy confirmed a relapse. Chemotherapy put Wes’s cancer into remission this time. The next step might have been a second

a vision and strategic plan to make care for children with cancer and with other disease even better.”

Dr. Renberger is hopeful those gifts will lead to better

transplant, but Riley pediatric oncologist Jodi Skiles,

treatments. Instead of using the same formula to

M.D., instead approached the Corbins about a study

calculate the dose of every drug used for every patient,

at the Children’s Hospital of Philadelphia. “She said,

doctors can preemptively do genetic testing on every

‘It’s changing the way cancer’s going to be treated, and

child with cancer and use that information to put

Wesley meets the criteria,’” recalls Heather. She credits

patients into groups based on their disease risk and their

Dr. Skiles for spending many long hours getting her

risk for life-threatening or irreversible side effects. “I think

son into the study and the Corbins’ insurance company

what we will see over the coming 10 to 20 years in terms

on board.

of the incorporation of information on genomics into

The FDA has designated the investigational immunotherapy that Wes is receiving in Philadelphia a

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clinical practice will be amazing.”

As Wes continues down his own trailblazing

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Your Gifts Make a Difference Donations have helped Riley physician scientists launch new studies into better therapies for aggressive leukemia

treatment path, the teen is honored to be part of these developments: “When something does happen,” he says, “like if there was a cure for cancer that actually was found — wouldn’t it be awesome if Riley was where it was found?”

Wes is the first Riley patient enrolled in a trial where T-cells are engineered to fight leukemia

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Your Gifts Make a Difference Donations have helped Riley recruit doctors and educate staff on the latest medical advancements

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HEALING Bryson’s Brave Battle Bryson Kenneth Faus was born on March 5, 2013. It was one of the most joyful days of his parents’ lives.

March 6, 2013 was one of the scariest.

Brian and Caitlin Faus learned that their firstborn child

Because Bryson had a kidney inflammation condition known as bi-lateral hydronephrosis as well as a complicated series of heart defects (interrupted aortic arch, ventricular septal defect and a small aortic valve) many Riley specialists worked together with Dr. Rodefeld to coordinate his care. Those specialists included

had a life-threatening congenital heart defect. While they

pediatric cardiologists Tiffanie Johnson, M.D., and Mark

struggled to process this terrifying news, things started

Hoyer, M.D., surgeon Scott Engum, M.D., and pediatric

happening fast. Caitlin noticed a helicopter landing

urologist Richard Rink, M.D., who is part of the renowned

outside their window at DuPont Hospital in Fort Wayne.

Riley urology team that ranks second in the nation. “My

“I remember saying, ‘I have a feeling that’s for Bryson,’” recalls Caitlin. She was right. Doctors determined that

job doesn’t stop with caring for the heart, we care for the whole patient,” explains Dr. Rodefeld.

Bryson’s best chance for survival was a Lifeline flight to

Dr. Rodefeld performed Bryson’s first open-heart

Riley Hospital for Children at IU Health. “We were told to

surgery, the Norwood procedure, when Bryson was

take pictures, because they didn’t know if he would make

6 days old. Then, after Bryson reached 7 months, Dr.

it there,” says Caitlin.

Rodefeld performed a version of the Rastelli procedure

At Riley Hospital, pediatric heart surgeon Mark

called the Yasui, closing the hole between Bryson’s heart

Rodefeld, M.D., took time to explain Bryson’s condition

chambers and adding a bovine valve to create a more

to Caitlin and Brian. Then, he explained it all again to

stable circulation. Bryson also needed several ureteral

Bryson’s grandparents when they arrived, taking that

stent surgeries to help with his kidney problems and a

burden off the stressed couple’s shoulders. “It was a

G-tube to deliver nutrition, since his weak circulation

relief. It was pressure off,” recalls Brian. “He answered

made feedings difficult.

every last question. He never made it feel rushed.”

Today, Bryson is back home in Fort Wayne, walking,

“It’s extremely important to give parents hope that

talking, eating and growing like a typical toddler. He will

their child can be okay,” says Dr. Rodefeld, a father of

need surgery in the future to replace his heart valve, but

three. “I would want to have that kind of communication

his outlook is great. “Without Riley, Bryson might not

and message if it was my child.”

be here today,” Caitlin says. “Riley is most definitely a blessing, and a place that provides so many families with hope. We are forever grateful.”

Did You Know?

Riley physician-scientist Dr. Mark Rodefeld, M.D., is developing a heart pump to help children with single-ventricle defects lead longer, healthier lives.

Gifts from donors are an increasingly critical source of support for Riley’s pediatric research team.

Brian, Bryson and Caitlin Faus, Fort Wayne, Ind.

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Your Gifts Make a Difference Donor funding provides critical salary support for Riley Social Workers and Child Life Specialists

Ariel Guerrero Coram, N.Y.

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2 001 41 4R iRl ie l ye yC hC ihl idl rder ne ’ns ’ sF oF uo nu dn ad tai toi no nA nA nn un au l a lR eR pe op rot r t

COMFORT Home Away from Home Some people wear their heart on their sleeve.

Willie Guerrero wears his on his skin.

The proud father from

growing stronger. During those stressful months far away from home, the Guerrero family was grateful for the doctors and nurses who provided excellent care, and for the Riley Child Life and Social Work teams who offered

Coram, N.Y., has a Riley wagon

comfort and support.

tattooed on his arm. It’s a

While Lolita stayed by Ariel’s side, Willie had to return

statement of his gratitude for

to work in New York. Social worker Emily Strait helped

the hospital that saved his

him get a free flight voucher through Southwest Airlines

daughter’s life and embraced

so he could make a return visit to Indianapolis. “That

his shocked family in their

meant a lot to me,” said Lolita in February, with Ariel

time of need.

sleeping nearby in their room in the Riley Newborn

Ariel Guerrero was born

Intensive Care Unit. “That was a big thing, to have him

on November 16, 2013, more

come spend time with the baby. I am so blessed to have

than three months before her due date. Her parents were visiting northern Indiana to buy a dog when Lolita Guerrero went into preterm labor and gave birth to her first child. “She was so tiny,” recalls Lolita. “She weighed just a little more than two pounds.”

everyone! They’re the best here.” Strait humbly returned the compliment to the new mother. “The way you’ve been coping has been amazing,” she told Lolita.

Empowering families is a critical part of the social work mission at Riley. “As social workers we feel that we are privileged to stand by the family’s side while they face life-changing events,” says Lauran Canady, Riley’s Clinical Manager of Social Work. “The gifts that are given by donors are essential to our ability to help families overcome crisis.”

Last year, gifts made through Riley Children’s Foundation allowed social workers to provide families help in many forms including: a two-week hotel stay for the family of a newly discharged infant while they completed the purchase of a trailer; utility bill coverage for the struggling family of a child hospitalized after brain tumor surgery; and cremation expenses for a lifelong patient who lost his medical battle.

“Social work provides a unique advocacy for families

Carrie Gorski-Murphy, RN, with Ariel Guerrero, Coram, N.Y.

that is not found in other areas of the medical system,” After a few weeks, Ariel developed a severe intestinal complication known as necrotizing enterocolitis. She

our services as possible to each family we serve.”

Today, Ariel is back home in New York, growing big and

needed specialty care that only Riley Hospital for

doing great. The Guerreros say they could never forget

Children could provide. A December snowstorm made a helicopter flight impossible, so an ambulance carried Ariel safely to Indianapolis. She had emergency surgery at Riley, then spent several months recuperating and

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says Canady. “We want to be able to provide as much of

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how Riley served their entire family—even if it weren’t for the permanent reminder on Willie’s arm. “They will always be my family,” says Lolita. “For life.”

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R I L E Y C H I L D R E N ’ S F O U N D AT I O N

FINANCIAL OVERVIEW F i s c a l Ye a r E n d e d J u n e 3 0 , 2 0 1 4

Contributions

$ 26,470,475

Cash Disbursements in Support of Riley Hospital for Children

$ 21,350,641

Net Assets

$ 349,555,678

“I didn’t fully understand what a great place Riley was until we were here. It’s important for people to know how much of a difference they’re making by donating to Riley—not just for these little kids, but for their families.”

– Danae Miller Elkhart, Ind.

Skylar and Danae Miller Elkhart, Ind.

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SOURCE OF

CONTRIBUTIONS Kobe Brannan, Marshall, Ill., shows off an Elements Financial Riley affinity credit card.

More than 15,000 students raised $4.6 million last year through Riley Dance Marathons.

The Keller family of Indianapolis (Madison, Riley, Carson, Jennie, Darren and Dylan) made a gift supporting pediatric cardiology research in honor of Dylan’s Riley journey.

Riley NICU patient Aiden Lipp (pictured with his mother Mackenzie Woodard) inspired his greatgrandmother Barbara Woodard’s planned gift to Riley.

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The Anne Goss Foundation supports Child Life Specialists who serve Riley cancer patients, including Lane Dunscomb, Greenwood, Ind.

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C A S H

D I S B U RS E M E N TS Research $8,967,931

Museum Home $319,513

Buildings and Equipment $4,378,417

Child Abuse and Neglect Prevention Campaign $265,261

Clinical Programs/Patient and Family Services $3,154,353

Jump IN for Healthy Kids $200,000

Chairs/Professorships/ Education $2,959,929

Hospital and Community Program Support $342,327

Camp Riley and Other Camps $762,910

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Total Contributions n Unrestricted

$3,575,822

n Temporarily Restricted

$19,729,773

n Permanently Restricted

$3,164,880

Total

$26,470,475

Net Assets by Category n Unrestricted Unrestricted

n Board Designated Temporarily

n Restricted

Permanently

n Restricted

$84,073,481 $65,866,539 $91,908,426 $107,707,232

Net Assets $349,555,678

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Kadyn Hogg, Greensburg, Ind.

Riley Children’s Foundation

Board of Governors 30 S. Meridian St., Suite 200 Indianapolis, Indiana 46204-3509 317.634.4474 877.867.4539 toll-free riley@rileykids.org Help kids now at RileyKids.org Facebook.com/RileyKids Twitter.com/RileyKids YouTube.com/RileyKidsVideo

Chairman - James T. Morris Treasurer - Kristin G. Fruehwald Secretary - Rebecca Kubacki John K. Banks

Karen S. Pence

Gerald L. Bepko

George F. Rapp, M.D.

James R. Cumming, M.D.

Ronald F. Remak

Donald C. Danielson

David A. Ricks

Daniel F. Evans, Jr.

Cathleen L. Rooney

Karen Ferguson

Jerry D. Semler

Anton H. George

Jacqueline Simon

C. Perry Griffith, Jr.

Cynthia Simon Skjodt

Jay L. Hess, M.D., Ph.D., M.H.S.A.

Michael L. Smith

Craig S. Huse

Eugene R. Tempel

Carlie Irsay-Gordon

John T. Thompson

Robert G. Jones

Richard D. Waterfield

Forrest D. Lucas Rev. Edward A. Malloy, C.S.C.

HOPE HAPPENS HERE

Life Governors Robert R. Baxter