2020 Spring Riley Messenger

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What’s Inside

RILEY’S

Cover story, pgs. 1-4:

QUEST CURE

Quest for Cures

How researchers, kids and donors are accelerating Riley’s fight against childhood disease Pgs. 5-6

Cancer Cures Riley’s urgent mission to cure kids like Marcus

Pgs. 7-8

Team Tumornator

Reuben Kapur, Ph.D. Wells Center for Pediatric Research Interim Director

A teenager gives back to help his Riley doctor cure other kids

Pgs. 9-10

Voices of Riley “Riley gave her hope when other doctors told us she was going to die.”

Pg. 11

Riley News and Highlights Fetal Center opens new location at Riley for complex pregnancies

We welcome your story suggestions.



He is searching for cures.

Please email ideas to TShepherd@RileyKids.org

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STfor RES

“

In considering how to best designate funds in my will for planned giving, Riley Children’s Foundation checked all the boxes for me.

Their amazing pediatric research program, which targets such significant conditions as cancer, heart defects and cystic fibrosis, may one day be the cornerstone of discoveries that help to eradicate those conditions from the face of the earth. It gives me comfort to think that in some small way I might be a contributor to those efforts, and that something good and remarkable may come of them.”

- Chris St. Paul Riley Planned Giving Donor

Jack Moon, Plainfield, Ind., is now cancer-free following treatment for Burkitt lymphoma

She is funding his research.

Both are helping kids like Jack fight.

Liz Elkas with Riley kid Piper Lyon, Indianapolis

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6

QUEST

FOR

CU R ES

Rapid Rise in Rankings

249

new discoveries published in 2019

213

active grants fueling work at the Herman B Wells Center for Pediatric Research

“

$14.5 million granted to research from Riley Children’s Foundation donors last year

The Riley/IU School of Medicine Pediatrics Department rose to sixth in the nation in terms of funding from the National Institutes of Health in 2019.

*Source: IU analysis of NIH data

We could not have achieved this much growth so rapidly without our generous and visionary donors.

Their support has enabled us to recruit world-class investigators and fund their exploratory work that leads to larger grants. These gifts are leading to tangible progress in pediatric medicine, which translates to young lives saved and better quality of life for survivors of childhood disease.”

- D. Wade Clapp, M.D.

Chair of Pediatrics, Indiana University School of Medicine Physician-in-Chief, Riley Hospital for Children at Indiana University Health

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Jack Defeats Cancer Investigators with the Wells Center for Pediatric Research (Riley Hospital’s donor-funded research program) are putting childhood cancers on notice, with several teams making real progress toward a cure.

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Researchers led by Karen Pollok, Ph.D., are focused on understanding what makes tumors unique and using that information to fight them. Her team uses precision genomics to hack the molecular profiles of individual tumors, which are collected from Riley patients in a highly regulated process. The tumors are then recreated in mice so new drugs and drug combinations can be tested.

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Reuben Kapur, Ph.D., interim director of the Wells Center, and his team of researchers are focused on what causes leukemia cells to multiply so rapidly. Kapur found a crucial molecule that aids the proliferation, and has published findings about a drug that targets it to stop growth. Another team member, Ji Zhang, Ph.D., discovered why some children stop responding to a common leukemia therapy.

Dr. Zhang has been awarded a $2.2 million grant to figure out how to overcome that resistance.

“We’ve made some huge strides in understanding and finding treatments for different types of leukemia. We’re continuing to look at other important areas, including how leukemic cells respond to therapies when kids are diabetic or obese, which are issues here in Indiana,” Dr. Kapur says.

Philanthropic contributions to research through Riley Children’s Foundation make a real difference in what investigators are able to consider. “To cure cancer, we need to think logically and also be creative,” Dr. Pollok says. “If you have a hunch about something, and you have a little extra money, that’s where the breakthroughs can happen. Donors allow us to explore.”

Jack Moon, the funny, outgoing and athletic kid who “doesn’t know a stranger,” should have spent last fall learning the ropes of middle school.

Instead, he spent 52 days at Riley Hospital battling cancer.

A swollen lymph node was the first sign of trouble. Blood tests soon led to a diagnosis of Burkitt lymphoma, a rare and aggressive type of non-Hodgkin lymphoma. Under the guidance of Riley Pediatric Hematologist/Oncologist Kyle Jackson, M.D., Jack fought hard, completed chemotherapy treatment and emerged cancerfree.

Jack celebrated his first day of seventh grade in January. Now, he is working on regaining strength so he can return to the sports he loves.

He visits Riley every month to make sure the cancer is gone for good.

“Being a family member of a patient gives you great appreciation for what Riley stands for and all the great things they do,” said Steve Moon, Jack’s father. “I don’t think it’s possible for Riley to be what it is without the donors and the funding they provide for research, staff and programs like Child Life. No one really thinks about what it takes to make all of this happen because it’s so well-coordinated and so well done. There really isn’t any hospital like Riley.”

To make a gift in support of Riley research, or to request a personalized discussion with a gift officer about philanthropic opportunities, visit BeTheHopeNOW.org or call 317.759.6901.

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RILEY’S URGENT MISSION

CANCER

T

CURES

hree-year-old Marcus Neblett is a “laid-back, cool kid,” according to his mother Sherri. Marcus’ personality has served him well during a difficult medical journey.

Marcus was diagnosed with orbital rhabdomyosarcoma at 15 months old. Rhabdomyosarcoma is a rare cancerous tumor that forms in soft tissue — in Marcus’ case, around his eyes. When Sherri learned her baby had cancer, she knew they could find the highest quality care in their hometown of Indianapolis. “I had heard how great Riley is,” she recalled.

“I wanted Marcus to have the best treatment, so when we found out, Riley was the first thing I thought of.”

Riley Pediatric Oncologist Michael Ferguson, M.D., led Marcus’ treatment, including 46 weeks of chemotherapy at Riley Hospital for Children at Indiana University Health, and five weeks of radiation. After a brief cancer-free period, Marcus relapsed last fall and is undergoing more chemotherapy for at least nine months.

The Neblett family has developed a special bond

with their Riley caregivers. “They’re like family,” Sherri said. “They watch your kids grow up.

Marcus had barely started walking when he was first diagnosed.” She is especially grateful for Riley’s Child Life team—supported in large part by donors—for providing welcome distractions during lengthy appointments. “They always seem to come in right on time.”

Dr. Ferguson is optimistic that research will result in better treatment options to help kids like Marcus grow up healthy. He is collaborating on a study at the donor-funded Wells Center for Pediatric Research that uses tumor cells from his patients to test new therapies. “This is vital work,” he said. “The research will help to define new treatments for patients with aggressive or recurrent sarcomas.” The $14.5 million dollars Riley Children’s Foundation granted to the research team last year has helped this “vital work” accelerate.

For now, Marcus visits Riley with energy and hugs to spare. Sherri’s message for Riley Children’s Foundation donors who support her son’s care comes straight from the heart: “We love you!”

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To join Riley’s quest for cures by making a gift, visit BeTheHopeNOW.org.

Riley Hematology/Oncology clinic nurse Audrey Leisinger, RN, comforts Marcus Neblett, Indianapolis, during chemotherapy treatment

“

I wanted Marcus to have the best treatment, so when we found out, Riley was the first thing I thought of.”

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- Sherri Neblett

Riley parent, Indianapolis

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Brodie Mitchell noticed something was wrong while playing for his high school golf team in April 2019.

“I just thought it was headaches and it started messing with my golf swing,” he said. He was hitting more errant shots than usual and did not feel well.

A trip to the nearby hospital in his hometown of Crawfordsville, Ind., revealed a mass on Brodie’s brain.

Brodie’s mother, Erin Jones, immediately decided he would go to Riley Hospital for Children at Indiana University Health.

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Riley brain tumor survivor Brodie Mitchell sold “Team Tumornator” shirts to raise money for Riley research

TEAM

TUMORNATOR TUMOR After Brodie arrived by ambulance, the Riley pediatric neurosurgery team confirmed the finding and set a course of action: Brodie needed surgery. Brodie’s mom asked the section chief who would operate. “He said he had a ‘tumor guy,’ and that’s where the term ‘Tumornator’ came from,” said Erin.

Team Tumornator was born in the form of a support group for Brodie. Family, friends and fellow students at Southmont High School rallied behind him. Brodie in turn encouraged them to help raise awareness for others going through similar circumstances. A friend came up with the idea of making t-shirts to raise money for brain tumor research.

Riley Pediatric Neurosurgeon Karl Balsara, M.D., successfully removed Brodie’s tumor last June. He is also leading research to advance the understanding of brain tumors and improve treatment. “We are really trying to understand at a very root level what drives these tumors to develop and how we can potentially treat them without involving surgery,” said Dr. Balsara.

Dr. Balsara’s group is investigating treatment combinations

•

for aggressive brain tumors. By sequencing a genetic code from a patient’s tumor cells, researchers work to identify the molecular machinery that allows a tumor to grow and spread.

Then they can test various therapies to see which treatment works best.

While Brodie hasn’t needed that kind of therapy, Dr. Balsara used a fairly modern technique: a minimally invasive surgical system combined with computer-assisted technology known as neuro-navigation. It enabled his surgical team to get directly to Brodie’s tumor and allow for his relatively quick recovery.

Brodie, now 18, says he’s feeling good since his surgery.

“Team Tumornator” raised more than $3,000 for the Riley Pediatric Neurosurgery Research Fund. Brodie’s family presented the check to Dr. Balsara in December.

As his research continues, Dr. Balsara has one ultimate hope: “It’s to put myself out of a job,” he said. “I’d be happy not to be operating on tumors anymore.”

To contribute to the Riley Pediatric Neurosurgery Endowment, visit RileyKids.org/Neuro e ye N K iOdW. s . oorrgg ll 68 R i l e y C h i l d r e nH’Os PFEo uHnAdPaPtEi oNnS l HBEeRTEhle R Hiol p

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“

Riley gave her hope when other doctors told us she was going to die.”

- Carrie Hyatt Anderson, Ind.

Riley cardiology patient Carlie Evans, Anderson, Ind.

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V O I C E S

O F

R I L E Y

Riley = Faith

Kids Need a Chance

Riley Parent Anderson, Ind.

Riley Pediatric Cardiologist

by Carrie Hyatt

If I didn’t say I would like a second opinion, I wouldn’t have my baby girl.

Riley Hospital gave her hope when other doctors told us she was going to die.

Carlie is my youngest of five children. She was born 12 weeks prematurely weighing 1 pound, 4 ounces. She also had a serious heart defect. Doctors at the Indianapolis hospital where she was born told us Carlie was too small for heart surgery. They waited to see if her growth and medication would help, but three months later they told us our baby would not survive.

I wanted a second opinion. The doctors there suggested children’s hospitals in Philadelphia or Cincinnati, but they said they did not think Carlie would survive transportation because she was so fragile. Instead of just accepting the only real options they provided us—palliative and comfort care until she passed away—I said to myself, “I have to give my daughter a chance.”

I work for a physicians’ group in Anderson, Ind., and a colleague was kind enough to reach out on social media for guidance. Riley Pediatric Cardiologist Anne Farrell, M.D., happened to spot the social media post and jumped in to help.

When we transferred Carlie to Riley, everything changed.

Our Riley heart surgeon, Mark Turrentine, M.D., told us, “We have to try. There’s no reason to sit and wait and not do something.” The next day, Monday, July 1, 2019, Dr. Turrentine repaired Carlie’s narrowed aorta. He fixed everything for her.

Today, Carlie’s heart function is considered normal. She is doing great! I’ll never forget how it felt when her oxygen tubes were removed for the first time in her life. It was the best feeling ever to hear her cry.

When I think about Carlie’s future, I just want her to be a seeker and a motivator for all kids. I want her to show them that Riley has a lot of miracle babies who are able to beat the odds and go home. I want her to stand with those other kids and say, “Look at me and know there is a future for yourself.”

“Riley” has five letters and “faith” has five letters. Riley gives families like ours faith and hope when others can’t. We will always be grateful.

by Anne Farrell, M.D.

When very premature babies like Carlie Evans are born with heart problems, they face significant challenges and risks.

That’s why we are here. We’re used to taking care of the tiniest and most complex babies at Riley Hospital for Children at Indiana University Health. We’re experts at what we do.

We don’t shy away from risks.

In Carlie’s case, the hospital where she was born told her family they were out of viable options. Their team recommended palliative care to keep Carlie comfortable until she passed away, probably within the week.

If her mother’s employer had not reached out through social media and happened to connect with me through a physicians’ page, Carlie would have died. Thankfully, all the stars aligned for some divine intervention to happen for this child.

As soon as we got her transferred to Riley, my colleague Mark Turrentine, M.D., performed heart surgery. He accessed her heart from the side rather than doing open-heart surgery since she was so small—a technique that we specialize in.

Dr. Turrentine was able to remove the narrowed area of Carlie’s tiny aorta and sew the two ends of her aorta together.

Even when situations appear hopeless, we see kids who defy the odds all the time. Kids like Carlie definitely show us how worthwhile it is to donate to support our team at Riley. The funding we receive from Riley Children’s Foundation is helping our Riley Heart Center team ramp up research to improve our techniques and treatment options, even for the tiniest premature babies.

We want to see more survivors like Carlie. You are helping make that possible.

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RILEY NEWS AND HIGHLIGHTS

Infant Mortality Drops; New Riley Fetal Center Opens Indiana health officials have reported a dramatic drop in infant mortality—a promising trend fueled in part by a donorsupported expansion of the Riley Maternity and Newborn Health program.

Infant mortality fell at the highest rate in six years in Indiana, from 7.3 per 1,000 live births in 2017 to 6.8 in 2018.

Preliminary data shows Indiana families experienced 43 fewer infant deaths in 2018: 559, compared with 602 in 2017.

“The funding we receive from Riley Children’s Foundation has been pivotal in allowing us to build our team of Maternal-Fetal Medicine Specialists from two to 10,” said Frank Schubert, M.D., Co-Medical Director of Riley Maternity and Newborn Health. “Donors also support the Fetal Center at Riley Children’s Health by funding our nursing staff, medical director, patient navigator and simulation training sessions for caregivers across Indiana.”

The positive news about infant mortality emerged as the Fetal Center and the Riley Maternal-Fetal Medicine Clinic took

Riley ultrasound technician Lori Brookshear with Randi Dodson, Cumberland, Ind.

a historic step forward. Both of the clinics for high-risk expectant mothers have now moved from IU Health University Hospital into new space on the fourth floor of the Riley Outpatient Center. “We could not have grown our programs as rapidly and robustly as we have without donors,” said Dr. Schubert. “Now, with additional resources to coordinate care for patients with fetal anomalies, we are seeing the results in babies’ lives saved.”

OF NOTE 

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The sixth annual Reason to Dance ballroom dance fundraiser took place on March 13, 2020. The event has raised more than $500,000 for Riley to date. Learn more or donate at ReasonToDance.org.

Wells Center for Pediatric Research Investigator Roland Herzog, Ph.D., is the new Editor in Chief for Molecular Therapy, a leading international medical journal.

 Riley patient Maddie Dean from

Fort Wayne has been named the 2020 Children’s Miracle Network (CMN) Hospitals Champion for the state of Indiana.

Riley Children’s Foundation continues to enhance its Riley Philanthropy Council program in local communities across Indiana.

The Southwest Indiana Riley Philanthropy Council, for example, is engaging with the Deaconess Riley Children’s Specialty Center.

To get involved in your local community, please contact Michelle Turchan at MTurchan@RileyKids.org.

 Riley Hospital team members

broke new philanthropic records in 2019: 738 team members gave to Riley through employee giving, raising more than $470,889.

Southwest Indiana Riley Philanthropy Council member Ken Ellspermann with his son, Caleb

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Visit RileyKids.org/News

“

I believe the people of Indiana will find it in their hearts to contribute to this most important of causes: lifesaving care for our tiniest and most fragile citizens.”

– Liz Elkas, President and CEO, Riley Children’s Foundation

GOAL:

Surpass $175 million

by June 2020

Progress to date: $165 million

Riley Children’s Foundation continues to seek donors interested in making a lasting impact, particularly in the areas of pediatric research and maternity and newborn health. Be the Hope NOW: The Campaign for Kids will conclude June 30, 2020, and there is still a gap of more than $10 million needed to fulfill the $25 million commitment to Riley Maternity and Newborn Health. Additional funding is also needed for pediatric research and patient care.

“We cannot fall short of fulfilling our promise,” said Liz Elkas, President and CEO of Riley Children’s Foundation. “We must keep the momentum going. I believe the people of Indiana will find it in their hearts to contribute to this most important of causes: lifesaving care for our tiniest and most fragile citizens.”

Remembering John Andretti Riley Children’s Foundation extends deepest sympathy to the family and loved ones of longtime Riley advocate John Andretti, who passed away on January 30, 2020. Andretti helped raise $4.5 million through the Kroger Race for Riley and brightened the faces of countless Riley patients through hospital visits and special events. Memorial contributions to Riley can be made in Andretti’s honor at RileyKids.org.

How can I help Riley?

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Become a RILEY HERO with a monthly gift and DOUBLE your impact

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All Riley Hero donations will be matched on a monthly basis for one year, up to $100,000, thanks to a generous gift by the Butler family

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Monthly donors receive exclusive behind-the-scenes Riley updates

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New Riley Heroes welcome package includes artwork from Riley kid Ben Edwards

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Visit RileyKids.org/Heroes to sign up

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RILEY RESEARCH PROFILE

Dr. Ben Gaston

“

Riley Children’s Foundation is second to none, and it will allow Riley Hospital to be at the forefront of what’s next.”

W

- Ben Gaston, M.D.

hen celebrated pediatric pulmonologist Ben Gaston, M.D., was being recruited by Riley

Hospital for Children at Indiana University Health, there were a number of factors that made his decision clear: Riley’s world-class reputation, its renowned research arm and Indiana’s famous Hoosier hospitality.

“When you think of research powerhouses, you think of Boston and Philadelphia and Indianapolis; and Indianapolis is just a much nicer, friendlier place to live!” he laughs.

Dr. Gaston has settled in since his hiring last summer, serving as Vice Chair of Translational Research, which involves moving medical discoveries quickly into clinical practices. Dr. Gaston has experience in both sides of that equation. He started his career as a general pediatrician, serving in the Navy aboard the USS Iwo Jima and at Camp Lejeune, the Marine Corps base in North Carolina, alongside his wife, who is also a pediatrician. “At Camp Lejeune, we were away from major hospitals. We were taking care of most things by ourselves,” he says.

That experience piqued Dr. Gaston’s interest in the research side of pediatrics, which led to stops at Harvard, along with hospitals in Boston and Cleveland. His research played a crucial role in development of a drug for severe asthma that is now being tested in a national clinical study.

He has also started several companies aimed at bringing new therapies to patients, and was recently selected to lead a new Pediatric Translational Research team for Riley’s research program, the Herman B Wells Center for Pediatric Research.

Dr. Gaston says the future of medicine will be driven by physician-scientists making discoveries. He believes Riley Hospital is uniquely positioned to take the lead thanks to donors. “Pediatric practitioners often have to pretty much live in the clinic and the operating room, and they don’t have the chance to explore the science. That’s where children’s hospital foundations come in to help fund critical research,” he says. “Riley Children’s Foundation is second to none, and it will allow Riley Hospital to be on the forefront of what’s next.”

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Moving Mountains

Riley Messenger Spring 2020 Dedicated to friends and partners of Riley Children’s Foundation Riley Children’s Foundation 30 S. Meridian St., Suite 200 Indianapolis, IN 46204-3509 RileyKids.org Email: Riley@RileyKids.org Dave Ricks Chairman, Board of Governors Elizabeth A. Elkas President and Chief Executive Officer Meghan Miller Chief Operating Officer Karen Spataro Chief Communications Officer

Editor Trisha Lawless Associate Editor Jason Mueller Art Director David Birke Contributing Writers Bruce Kopp Maggie Loiselle Olivia Mozzi

FINAL WORD

It’s our job to move mountains to help Indiana kids who are sick.

We can’t settle for small, incremental improvements in children’s health. We must make giant strides against challenges like pediatric cancer, heart disease and infant mortality. That kind of progress demands grit and perseverance. And it requires mighty investments in Riley’s people and programs.

That is why I am so grateful that you have made giving to Riley a priority.

The children featured on these pages remind us what is at stake. Carlie’s little heart beats today because you cared enough to give. Marcus and Jack had Riley’s best weapons to battle their cancer because you filled the arsenal. Brodie defeated his brain tumor and began his own fundraising mission because you helped Riley heal him.

Your support is also fueling research that ensures even more kids can receive the Carlie Evans, Anderson, Ind. gift of a healthy childhood. Through our partnership with Indiana University School of Medicine, Riley is now one of the nation’s top 10 pediatric research programs.

Donor support makes that possible. It enables Riley to recruit world-class researchers.

It provides seed funding so scientists can launch new investigations, test new therapies and make crucial discoveries.

Those of us who love Riley have many reasons to celebrate, but we cannot stand still.

For every child like Carlie, Marcus, Jack and Brodie who is thriving, there are thousands of others who need us to do more – who are still waiting for us to move mountains so they can get back to the important work of being a kid.

We are in the homestretch of our $175 million fundraising campaign, which concludes in June. Our goal is in sight, but not yet reached. I welcome you to connect with me to learn more about joining our mission. I may be reached at LizElkas@RileyKids.org or 317-759-6901.

Together, we must ensure that Riley has the resources it needs to be the best children’s hospital in the nation. Let’s go move some mountains!

With gratitude,

Photography Antonio Chapital Paul D’Andrea

Elizabeth A. Elkas President and CEO Riley Children’s Foundation

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NONPROFIT ORG. U.S. POSTAGE PAID INDIANAPOLIS, IN PERMIT NO. 5677

30 S. Meridian St. Suite 200 Indianapolis, IN 46204-3509

Why I Give

M Y R IL EY STORY

It was 1991 when a small group of students including Amy Carroll Balcius organized the first Indiana University Dance Marathon (IUDM). They raised $10,900 for Riley Hospital for Children in memory of Riley patient and HIV/AIDS awareness activist Ryan White.

Tears were flowing last fall as Amy watched her freshman daughter Sofia run through an enormous tunnel of students at IUDM opening ceremonies, wearing the same t-shirt Amy wore in 1991. The 2019 event raised a staggering $4.25 million “For The Kids,” bringing the total to $40 million over three decades.

“I often say that being an IUDM founder is one of my proudest life achievements outside of giving birth to my children,” says Amy. “It’s so rewarding to see my daughter now making her own IUDM legacy.”

Amy served on the IUDM Executive Council for its first three years and as President in 1993. The experience was life-altering. “I had a palpable ‘fork in the

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Amy Carroll Balcius and Minda Balcius, Carmel, Ind.

road’ moment where I was interviewing to go into brand management at a major company or to join the Peace Corps, and I chose the Peace Corps,” says Amy. “I lived abroad for almost four years and met my husband Minda on the first day!”

Today, Amy is an active IUDM alumna and is co-chairing the 30th Anniversary Committee. The milestone, which will be celebrated this fall, inspired her family

to make a philanthropic gift to the ALC Legacy Endowment. The fund supports the operating expenses of IUDM and honors Ashley Louise Crouse, an IUDM Executive Committee leader who died in a car crash in 2005. “Having known Ashley personally, and wanting to celebrate the 30-year legacy of IUDM, this fund really spoke to me,” says Amy. The Balcius family established their gift as a match, which inspired many other IUDM alumni to give.

“Dance Marathon is the most awesome win-win scenario ever,” Amy says.

“These college students put their hearts into something bigger than themselves, and then they carry that commitment to service throughout the rest of their lives.”

To contribute to the ALC Legacy Endowment or explore other opportunities, visit RileyKids.org/alclegacy, email LizElkas@RileyKids.org or call 317.759.6901.

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