Strong Kids | 2018 | Volume 1

UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS

2018 VOL. I

The Doctor Is In Patrick Brophy is Golisano Children’s Hospital’s New Physician-in-Chief

Spotlight on:

Busy Division Keeps Growing and Specializing

Gastroenterology, Hepatology, and Nutrition

Nutrition Program Helps Kids with Feeding Issues

Coming soon: Pediatric Liver Transplant Service

Dear Friends First, allow me to say thank you. I’ve only been in Rochester for a few months, but have found myself overwhelmed by this community. The interactions I’ve had so far — be it with patients, staff, or supporters — have shown me that this is a community that truly loves its children’s hospital. And as I walk through the halls of the wonderful new tower, which was built by you, the community, I can’t help but feel the energy, vibrancy and care emanating from its walls.

That new building has given us a strong home base for children’s health in Rochester, the region, and indeed, nationally. It gives us something to build on as we continue our efforts — but we do still have a lot of work to do.

As the hospital’s new physician-in-chief, we will continue to develop our efforts on our amazing clinical, teaching and research enterprise. We will focus on our community and regional ties and how we can deliver excellence in patient and family-centered, value-based care. Given our committed and strong faculty, staff and community partners, we can continue to develop innovative and creative solutions for delivering health care focusing on the future but never forgetting our transformational past!

My predecessor, the wonderful and talented Dr. Nina Schor, used this space to speak directly to our community. That’s a tradition I intend to continue, and I’m so excited to share our journey with all of you!

Sincerely,

Patrick Brophy, MD, MHCDS Physician-in-Chief, Golisano Children’s Hospital William H. Eilinger Chair of Pediatrics

Golisano Children’s Hospital Board of Directors Mike Goonan, Chair* Al Chesonis Jeffery Davis John L. DiMarco II Roger B. Friedlander Jay W. Gelb John Halleran James E. Hammer Howard Jacobson Jennifer Johnson Todd Levine Scott Marshall Gary Mauro Raymond Mayewski, M.D.

Kim McCluski* Kathy Parrinello, R.N., Ph.D. Brian Pasley Dante Pennacchia Ann Pettinella Angela Pichichero Jennifer Ralph* Mark Siewert Mike Smith* Steven M. Terrigino* James G. Vazzana Alan Wood Bruce B. Zicari II

Faculty

Ex-Officio

Kate Ackerman, M.D. Susan Bezek, M.S., R.N., P.N.P-B.C. Mitchell Chess, M.D. Richard E. Kreipe, M.D. Karen Powers, M.D.

Kellie Anderson* Patrick Brophy M.D.* Steven I. Goldstein Kelly McCormick-Sullivan Douglas W. Phillips R. Scott Rasmussen* Mark Taubman, M.D.

Honorary Members Michael Amalfi Bradford C. Berk, M.D., Ph.D. Joseph Carbone, D.P.M. David F. Christa Judy Columbus Wanda B. Edgcomb Harvey B. Erdle Timothy D. Fournier Jack Goodrich Deborah Haen Nick Juskiw Elizabeth R. McAnarney, M.D.* Thomas McInerny, M.D. Gail Riggs, Ph.D. Nancy Robbins Jeffery Rubenstein, M.D., M.P.H. *Executive Committee

From left: Michelle Eaton, NP; Koji Tomiyama, MD; Jennifer Iuppa, PharmD; Taryn Schieber, RN; Nanda Kerkar, MD

For the past decade, children in Upstate New York who needed a pediatric liver transplant didn’t have any local options. With no nearby providers, this meant long car trips or plane rides to New York City or centers in other states to get the care they needed — not only for the surgery itself, but also for the majority of the required follow-up visits and treatment.

That will change this summer when UR Medicine’s Golisano Children’s Hospital launches a new program aimed to help treat children with serious liver problems.

Led by Nanda Kerkar, M.D., Professor of Pediatrics, the team hopes to perform its first transplant by July.

“The institution made a commitment to developing a viable liver transplant program for children here at Golisano Children’s Hospital, and they really did it in the right way,” said Kerkar. “They consolidated the adult liver transplant program by hiring new transplant surgeons and hepatologists, making it into a real strength, and then they built this wonderful new children’s hospital building. The next logical step was to start up the pediatric liver transplant program.”

Kerkar comes to Rochester after serving as the Medical Director of Pediatric Liver and Liver Transplantation at Children’s Hospital Los Angeles. Previously, she held the same position at The Mount Sinai Hospital in New York City from 2006 to 2012.

In addition to the transplant program, Kerkar has also

led the development of the pediatric hepatology service by starting a pediatric liver clinic. The clinic, which is equipped with Fibroscan technology to reduce the need for liver biopsies during follow-up, will provide diagnoses and full coverage for children with liver problems. A liver transplant clinic has also been established, which allows those who previously had their transplants elsewhere to stay closer to home for follow-up treatment. The liver transplant evaluation clinic will begin this spring.

“If you have a child with liver problems, obviously you don’t just rush to the first transplant center. You want to see an experienced doctor, get the right diagnosis, try the appropriate medical treatments or medications, and if all that doesn’t work, then you go to the transplant option,” said Kerkar. “So, we’re eager to build up the hepatology component of the transplant program as well.”

In addition to Kerkar, the Pediatric Liver Transplant team includes transplant surgeon Koji Tomiyama, M.D.; Michelle Eaton, N.P.; Taryn Schieber, R.N.; Jennifer Iuppa, PharmD; Jennifer Aquilina, social worker; and dietician Theresa Harte. The pediatric transplant team is supported by the adult transplant team including the transplant surgeons, hepatologists, pharmacists and administrators; as well as the Pediatric Gastroenterology faculty and team.

The hepatology clinic, located at Clinton Crossings, has been seeing patients since last July and can be reached by calling (585) 275-2647.

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Growth and Innovation

Pediatric Gastroenterology, Hepatology and Nutrition is expanding and adding new ways to serve patients

Providers stand in the new pediatric endoscopy suite

The Pediatric Gastroenterology, Hepatology and Nutrition Division is already the busiest pediatric subspecialty service, and aims to be even more so – by becoming the only full-service Digestive Disease Center in the state outside of the New York City area.

The division, led by Lawrence J. Saubermann, M.D., cares for diseases involving the large and small intestines, esophagus, stomach, pancreas, liver and gall bladder. Its physicians, advanced practice providers, social workers, psychologists, and dieticians help children with a wide variety of conditions, including inflammatory bowel disorders, celiac disease, liver diseases, reflux, abdominal pain, constipation, irritable bowel disease, chronic nausea and vomiting, and eating disorders. The department has expanded rapidly in the past five years, growing from three physicians to eight, moving into a new outpatient clinic at Clinton Crossings, and opening a brand new endoscopy suite in the Golisano Children’s Hospital.

Many patients are treated here in Rochester, but the most complex conditions sometimes require trips to specialty clinics at large pediatric referral centers on the east coast or in the Midwest. For the past several years, the division has been adding specialty services to provide advanced care closer to home.

“A multidisciplinary approach toward complex diseases is necessary these days in order to provide optimal care to sick children,” says Saubermann, and the division has forged a number of new relationships and clinics to meet these 3

needs. For instance, Esther Prince, M.D., is working with Pediatric Allergy, Pulmonary, and ENT divisions as part of an Aerodigestive Center. This center is treating conditions that involve the upper respiratory and GI tract, like the allergic condition known as eosinophilic esophagitis, or recurrent aspirations/pneumonias due to developmental defects.

Also, through their Pediatric Advanced Nutrition Service (PANS), the division is working closely with the GCH Pediatric Surgeons and Radiologists to assist in managing the neediest of patients’ nutrition requirements. Children who are born premature, or have major disease complications, like short gut syndrome, may require specialized nutrition support for a time or even permanently. This often includes insertion and removal of feeding tubes placed in infants, and managing nutrition in children who sometimes require feeding in their veins to stay alive. These forms of feeding require very close monitoring of their labs, since all their caloric and vitamin requirements have to be met in order for them to grow properly.

The recent addition of a specialist in pediatric liver transplants, Nanda Kerkar, M.D., filled an important spot in the portfolio of the services the division can offer.

Golisano Children’s Hospital is now the only liver transplant group in upstate and western New York state, and the only pediatric-specialty group in liver transplant outside of New York City; the group expects to perform its first transplant this summer.

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Research spotlight: In the coming year, the division is working to put another crucial piece in place: A specialist to care for complex disorders related to pediatric gastrointestinal (GI) motility.

When nerves or muscles in any portion of the digestive tract do not function with their normal strength and coordination, a person develops symptoms related to these motility problems.

The condition can affect both children and adults. For example, if the esophagus is not functioning properly, people may have difficulty swallowing, or if the large intestine isn’t working, they may have severe constipation.

Only a few centers in the country provide advanced diagnostic and treatment options for pediatric motility; specialists in this discipline are rare, with only a small number of training centers in the United States. Establishing a specialty service in motility is the next step in meeting the division’s vision to become the one-stop destination for pediatric gastrointestinal patients in New York, and the northeast region.

As the division expands its focus on specialized services, it also plans to adopt new treatment approaches to deal with complex conditions. For instance, a more personalized medicine approach, using genetic testing, appears to be on the horizon for treating patients with inflammatory bowel disease (IBD). This approach has been used to good effect in treating cancer patients, Saubermann notes, and could help their patients as well. The division is already participating in clinical trials of upcoming immune therapies for IBD, and as the division grows, there will be more opportunities for research in IBD and other GI areas.

Many of the GI issues can be very stressful for patients and their families, and the reverse is also true: stressful situations can trigger many GI symptoms. The team’s psychologists, dieticians, and social workers all work together to provide care, guidance and support to help patients manage their symptoms emotionally as well as physically.

“It’s a very exciting time to be in the field of pediatric gastroenterology,” Saubermann says. “We have new therapies for inflammatory bowel and liver diseases, and much better options for diagnostic testing and imaging in children. By working together with other specialists, we are able to provide an all-encompassing GI ‘home’ for sick kids in our developing Digestive Disease Center at Golisano Children’s Hospital.”

For City Kids with Asthma, Telemedicine and In-School Care Cut ER Visits in Half Children with asthma in the Rochester City School District who received a combination of telemedicine support and school-based medication therapy were almost half as likely to need an emergency room or hospital visit for their asthma, according to new research from the University of Rochester Medical Center (URMC) published in the journal JAMA Pediatrics.

One in 10 children in the United States has asthma, making it the country’s most common chronic childhood disease. Though symptoms can be effectively managed through regular use of preventive medicine, children must first be diagnosed, and then must regularly take their medication — minority children living in poverty, in particular, do not always receive these interventions. As a result, these children suffer many preventable and potentially dangerous asthma flare-ups, which can lead to expensive emergency room visits.

The new study, which enrolled 400 children in the city school district, expands on previous URMC research which showed that children with asthma who took their preventive medication at school under the supervision of their school nurse were less likely to have asthma issues. The addition of the telemedicine component — which allows for the child’s primary care provider to stay readily involved in the child’s care — makes the program more sustainable and scalable, potentially allowing it to be used as a model for urban-based asthma care nationally.

“Clinicians and researchers across the country are designing similar programs, using resources available in their communities to reach underserved children with asthma and help them get needed assessments,” said Jill Halterman, M.D., M.P.H., Chief of the Division of General Pediatrics at URMC and the study’s lead author. “But regardless of how you’re reaching them initially, those children may continue to have issues if they aren’t taking their medications regularly. The integration of telemedicine with supervised treatment through school provides one model to ensure that children receive consistent, effective asthma treatment.”

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The Doctor Is In On January 1, we welcomed Golisano Children’s Hospital’s new physician-in-chief to Rochester.

Patrick Brophy, M.D., who previously served as Director of Pediatric Nephrology at University of Iowa Health Care, is the 8th Chair of the Department of Pediatrics. We spoke with him shortly after his arrival.

Welcome to Rochester, Dr. Brophy! Can you tell us a little bit about your background?

Thank you very much for the warm welcome!

It has been such a positive experience moving to Rochester and being able to embrace all the positive energy from the community and the momentum that the Department of Pediatrics and the Golisano Children’s Hospital have!

I am a Pediatric Nephrologist and completed my research (in kidney genetics and development) and clinical fellowship training at the University of Michigan in Ann Arbor. I was a faculty member there for several years and was recruited to the University of Iowa in 2007 to assume the Division Directorship of the Pediatric Nephrology group there.

Over the course of the decade prior to my arrival at the University of Rochester, I was extremely fortunate to have worked with an amazing team of physicians, nurse practitioners, nurses and many other healthcare and research professionals and together we were able to develop a world-class division — with an international presence in the clinical and research areas as well as a strong fellowship and teaching program — for our students and residents.

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In 2013, a team of us graduated from the Tuck Business School at Dartmouth with a Master’s degree in Healthcare Delivery Sciences with a project task of building a Children’s System of Care for Iowa. During this process, we explored a variety of technologies and, with a strong innovations team we were able to build a unique center (The Signal Center for Health Innovation) that allowed us to explore the utilization of unique healthcare delivery techniques as well as a microsystem and lean analytics for changing clinic operations. This also included the securing of several federal grants to help deploy a network of telehealth sites across the state.

What brought you to Golisano Children’s Hospital?

The opportunity to become part of the fabric of the storied University of Rochester Department of Pediatrics and work with an amazing team to build upon the strong legacy of child health was clearly something I could not pass up!

The Department of Pediatrics here has a rich history and has made many vital contributions to children’s health.

One example: When I was a first-year resident in Winnipeg, Manitoba, we used to see many children come to the hospital with haemophilus influenza type b (Hib).

It was a terrible disease — often, by the time a child became symptomatic, it was too late for us to help, and I personally saw many children die from these infections.

But sometime between my first and second year, the Hib vaccine, which was developed in Rochester, became 7

available. And after that, we just didn’t see that disease anymore; I can’t imagine how many lives have been saved as a result. So it’s wonderful to be in a place that has made contributions like that to children’s health, and I hope we can continue building on that legacy.

Another main factor is the way our hospital is set up.

Thanks to all the tremendous efforts of the providers here — including my predecessor Dr. Nina Schor — and the overwhelming support of the community, we now have a wonderful new children’s hospital building. But since that new building is attached to Strong Memorial Hospital, we also benefit from the numerous services that they already have available.

Many of the freestanding children’s hospitals in the country don’t have that benefit; they have to duplicate virtually every service that might already exist in a nearby adult hospital, which can be extremely expensive. But here, we’ve got the best of both worlds: a space designed specifically for children, and support from our adult colleagues who are literally next door.

This not only allows us to share resources, but really supports a continuity of care across the lifespan, and allows us for a more seamless transition for teens and young adults who are graduating from pediatric services. I think that nationally, this type of model is going to be what other health care systems implement going forward.

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Continuity of care across the lifespan — that’s something I’ve heard you mention before. Can you expand on that?

Sure. Basically, as a health care system, we want to ensure that all of our care groups are integrated, so that we can provide seamless care through a person’s entire life — starting with maternal fetal medicine all the way through geriatrics.

So one place in pediatrics where this is important is for those patients that I just mentioned: We are seeing more and more teenagers and young adults with complex illnesses graduate to the world of adult care.

This really shows how many advances we’ve made treating some of these diseases, because children with many of these complex illnesses used to die at much younger ages.

But it also means we need an integrated system of support to help continue caring for these children as they get older.

So what we already have in place here with the Complex Care Center is wonderful. I’d like to continue to advance our efforts in that area.

How else do you think pediatric care will change in the coming years? Any short- or long-term goals for Rochester that you’d like to share?

I think we, as care providers, need to continue to engage with our community and to understand the needs of our patients. Right now, we ask the patients to do a lot. We ask them to come here — usually during the workday — and

park in the garage, and so forth. And then we sometimes get frustrated when they miss their appointments. But as we understand more of the social determinants of health, I think there’s a real opportunity to expand on our programs to meet people where they are.

We already have several great programs here — we’ve done a number of things through telemedicine, through school-based medication programs.

We have to be thoughtful, and we have to be fiscally responsible, but I think we have a chance to be an example, regionally and nationally, of how to do this well.

Anything else you wanted to mention?

The Department of Pediatrics at URMC and Golisano Children’s Hospital provide us with an amazing platform to be innovative, agile and patient-centered. We are duty bound to train the next generation of health care leaders and integrated teams along with our amazing medical and dental school, along with our ever-growing collaboration with the School of Nursing and others.

We also must continue to strive for research excellence and continue the strong tradition of seminal discoveries that have shaped child health and impacted so enormously on improving pediatrics across the nation and beyond.

Finally, we must also move forward building on our innovative clinical approaches to better serve our most vulnerable patients and their families.

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Clearly, he’s used to the routine.

Michael makes a trip to the doctor’s office at least once a month to see a specialized group of caregivers — the Pediatric Advanced Nutrition Support (PANS) team — who work to address the many nutritional challenges he faces.

Michael was adopted, and his parents don’t know much about his early days. But they do know that he was born with gastroschisis, a birth defect that caused his intestines to stick out of a hole beside his belly button. He had several surgeries as a newborn to fix the problem, but even after 9

surgery, the condition often leads to long-term challenges with eating, digesting, and absorbing nutrients.

For now, Michael receives all his nutrition through a feeding tube, but he’s working on trying new foods so his body can become used to eating and digesting.

“It’s an ongoing battle. He’ll do pretty well for a few months, and then, he’ll flare up and lose weight again,” said Maria, Michael’s mom. “But his team here has been with us every step of the way, and they are very supportive of our own goals for him.”

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Team Approach The PANS team, which includes a physician, nurse practitioner, two registered dietitians, and a social worker, is focused solely on caring for children like Michael who need ongoing, specialized support for gastrointestinal and nutritional issues.

It’s the only clinic focused solely on nutritional support and medical care in Upstate New York, and children and their families travel from 32 counties across the state and as far away as Arizona, Pennsylvania, and South Carolina for its services.

The team serves a wide range of patients, including premature infants who may be working on transitioning off a feeding tube, patients with developmental disabilities or genetic syndromes who often have nutritional problems, and children who are recovering from abdominal surgery.

“Achieving adequate nutrition for these kids is a real struggle, and for many of them, there’s no textbook that has the right answer,” said Megan Gabel, M.D., medical director of the PANS team, who works closely with nurse practitioner Colleen Hill-Sober. “We end up learning more from our patients than we can from medical literature — and caring for them is what has allowed us to develop our own expertise.”

The clinic was founded in 2009 by Marilyn Brown, M.D., to help fill the gap for children who are able to leave the hospital, but still require extensive nutritional support.

That first year, the team cared for 120 patients. By 2011, that figure had doubled, and now, the PANS team cares for more than 700 patients every year.

“Much of that increase can be attributed to the growth of our NICU,” said Gabel. “More extremely premature infants are surviving than ever before, but they often have immature gastrointestinal systems, and as a result, need long-term care.”

Because of the support the PANS team provides, many of those babies are able to leave the NICU sooner — and they’re less likely to have to be readmitted to the hospital.

A Family Affair The NICU is a familiar place for the Colons, who knew the ins and outs of Golisano Children’s Hospital long before adopting Michael. Their biological daughter, Maiya, was also born prematurely and suffered from necrotizing entercolitis, a devastating intestinal disease that often affects preemies and requires surgery.

It was during one of Maiya’s many return trips to the hospital that the Colons first met Michael. At the time, Michael was stable enough to leave the hospital, but was part of the foster care system and didn’t have a home to go to yet.

“We came to know him pretty well, and we all just kind of fell in love with him,” said Maria. “When we found out exactly what was going on, we decided to apply to become his foster parents.”

Michael was one-and-a-half when he left the hospital for the first time, going from around-the-clock care from

nurses and doctors to spending his first night at his new home with his new family.

“The PANS team really made that transition a lot smoother,” said Maria. “They managed his discharge and picked up right where the hospital left off.”

Michael has had his fair share of ups and downs since then, but now, he’s doing well. If he’s not lifting up his shirt to show off his belly, you’d never know how far he has come.

“I’ve known Michael since he was a baby, so to see him thriving now — that’s what makes our work so rewarding,” said Gabel. “He is just the sweetest kid.”

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phone 585-275-2268 email stephanie.sheets@rochester.edu web www.givetokids.urmc.edu/stroll Golisano Children’s Hospital 300 E. River Rd., Box 278996, Rochester, NY 14627 GiveToKids.urmc.edu Watch last year’s event on YouTube! Search: 2017 Stroll for Strong Kids 11

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Teen Receives First Fecal Microbial Transplant at Golisano Children’s Hospital Tyler Youngman was a little weirded out when he first heard about the procedure.

Really, how could you not be?

“I mean, it’s someone else’s… stool,” he said.

But a bacterial infection, known as Clostridium Difficile or C. Diff, had been sending him to the bathroom up to 15 times per day for months. After three rounds of antibiotics had failed, Tyler was ready to try anything — even a fecal microbial transplant.

The procedure, whereby another person’s healthy stool is transplanted into a recipient, repopulates a patient’s large intestine with healthy bacteria, and would hopefully help Tyler’s body battle the terrible infection. Tyler’s procedure in November, performed

by Lawrence J. Saubermann, M.D., Chief of Pediatric Gastroenterology, Hepatology and Nutritition, was the first fecal microbial transplant performed at Golisano Children’s Hospital.

Soon after the procedure, the diarrhea had dropped off considerably, and three subsequent tests found no trace of the original infection in his system.

“It really only took about two days before he started feeling better,” said Mellissa Youngman, Tyler’s mom.

Tyler was diagnosed in 2016 with Behcet’s Disease, a rare condition that causes blood vessel inflammation throughout the body. Dr. Saubermann and David Siegel, M.D., Chief of Pediatric Rheumatology, have been treating him since then, along with a variety of other experts.

The past year brought numerous complications for Tyler, and he spent several stretches at Golisano Children’s Hospital. But his familiarity with the team made it easy for him; he jokes that he’s on a first-name basis with most of the doctors and nurses now.

“We’ve been through the protocol so often that he knows what to expect,” said his mom. “The nurses are great — they’ll say ‘Oh hey, Tyler’s back. What are you in for?’ They try and keep it light, and to tease him, which just goes along with his personality. He’s got such a good attitude — he’s really my hero.”

Tyler’s journey isn’t over, but he’s fighting to overcome any barrier that his Behcet’s Disease puts in his way. Once he graduates college, he wants to be a pediatric nurse, so he can help other children deal with their own conditions.

“I try not to get down — I’m always just trying to think positive,” says Tyler. “And I think that’s really what helps.”

A great day of golf on three private courses again this year: Monroe Golf Club, Country Club of Rochester, and Oak Hill West.

For more information or to register please call (585) 273-5948 or contact Betsy Findlay at bfindlay@ admin.rochester.edu.

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Fairport Kids Give Back, One Dime at a Time

Small acts of kindness really do add up.

That’s the lesson students at two Fairport schools learn every fall when they pool together their spare change — not to buy a new toy or video game, but to help raise money for Golisano Children’s Hospital.

Their efforts are part of an annual, two-week coin collection at Northside and Dudley Elementary Schools that has now raised a total of $20,000 to support the region’s sick and injured kids.

“We have students who break open their piggy banks, bring in gifts from the tooth fairy, and donate their earnings from summer lemonade stands to make this event a success,” said Erin Moretter, assistant principal at Northside. “It is always so heartwarming to see how the kids choose to put others ahead of themselves.”

At the end of the collection, students and staff celebrate their hard work at the Fall Crawl, a 1-mile walk around the two schools. The event is kicked off by a series of speeches, including one from Jennifer Johnson, reporter and anchor at 13WHAM and a children’s hospital board member, who energizes the students and reminds them that their generosity is directly helping other children.

The students, decked out in their Fairport red, then set out on their 1-mile trek — cheering and skipping along the way. Many of the children prepare for the walk by making signs for the event, with messages like “Be a Game Changer” and “Be Strong, Golisano Children!”

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“The walk really has an energetic, feel-good vibe. It gives them a chance to feel that intrinsic reward of helping others, while having some fun at the same time,” said Moretter. “There’s music playing, and the children’s hospital mascot, Sandy Strong, makes an appearance. It’s something the kids really look forward to.”

Northside, which serves third- through fifth-grade students, held the inaugural crawl event in 2014 to coincide with Red Ribbon Week, a national movement in schools focused on building character and making healthy choices.

The following year, the school invited their neighbors at Dudley to join in — doubling the number of participants to 1,600.

“We wanted to bring that lesson of helping others to our younger students as well,” said Ryan Charno, assistant principal at Dudley, which serves kindergarteners through second-graders. “Many of our own students have been impacted by the children’s hospital, and that has really driven home how important it is for us to have this facility in our backyard.”

The coin collection and crawl was inspired by the efforts of Martha Brown Middle School, which has been raising

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money for the hospital since 2005 through a variety of events, including a math-a-thon, dance-a-thon, and walka-thon.

In total, Martha Brown has raised over $185,000.

“The entire Fairport Central School District has been so supportive of our hospital and our patients,” said Stephanie Sheets, assistant director of community affairs for Golisano Children’s Hospital. “The way that the students at these two elementary schools have joined in to help other children is inspirational, and the crawl is a great way for them to come together and celebrate the difference they are making.”

The coin collection and crawl has grown with each passing year, from raising $3,500 in 2015 to more than $8,500 in 2017. Charno and Moretter hope to keep expanding the event and possibly involve Fairport’s two other elementary schools.

“Our goal is always is to make it bigger and better,” said Charno. “But we want to make sure we always stay focused on the same goal: to show our future leaders what they can accomplish for a good cause when they work together.”

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to benefit Golisano Children’s Hospital

For two days in February, WHAM1180, Mix 100.5, and 13WHAM-TV joined forces to broadcast from the Strong Memorial Hospital lobby, sharing the inspiring stories of many of our children and families. And when it was all over, the Cares for Kids Radiothon had raised an astounding $266,072 for the patients and families at Golisano Children’s Hospital, a 30 percent increase from the previous year.

A huge thank you to Mix 100.5’s Julie Dunn, J.P. Hastings, Mayor Pete Kennedy, and Scott Brooks; WHAM1180’s Bob Lonsberry, Bill Moran, Dale Budzisewski, Deanna King and Jim Salmon along with WHAM1180 program director, Joe Bonadonna; and 13WHAM’s Jennifer Johnson, all of whom gave their time to help raise money for our patients and families. Wisteria Flowers and Gifts, a longtime children’s hospital partner, also donated colorful floral arrangements that were 15

delivered to patients’ bedsides.

Many groups volunteered to help answer phones over the 26 hours including our friends from Tops Friendly Markets, Walmart, the Children’s Hospital Board, Advantage Federal Credit Union, UR Tennis teams, Rochester Philharmonic Orchestra, Frontier Abstract, Drabik’s Orthodontics, and Consiliarium Group. Thanks to the many volunteers for their time!

Most of all, we’d like to thank the families who gave their time to come and support our efforts. For two days, the greater Rochester community listened to their stories, and learned just how important Golisano Children’s Hospital has been for many of them. Without the support of our community, our hospital would not be able to provide the world-class care that we are known for.

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Our thanks to the thousands of people who made donations throughout the two-day event – we are very fortunate to have such an amazing community of supporters!

Presenting Sponsor Tops Friendly Markets

Phone Bank Sponsor Rochester Philharmonic Orchestra

Half Day Sponsor

Special Thanks to the following in-kind donors: Wisteria Flowers and Gifts Champps Restaurant Dunkin Donuts Tops Friendly Markets The Pita Pit

Lisa’s Liquor Barn

Miracle Moment Sponsors Advantage Federal Credit Union, Pettis Pools & Patio, and Garber Automotive STRONG KIDS NEWS | 2018 VOLUME 1

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Special thanks to our Children’s Miracle Network Hospitals (CMNH) Sponsors for their support throughout the year!

Below are some of the highlights from the past few months.

Tops Dan VanAuker, a field specialist at Tops Friendly Markets, has organized a golf tournament for the past three years that has raised more than $136,000.

In addition, all of the area Tops stores have committed to helping the hospital through two in-store promotions every year, which raised more than $60,000 in 2017. Their generosity continues throughout the year through their support of the Stroll for Strong Kids and Cares for Kids Radiothon.

Tops has been a tremendous supporter of the children’s hospital for several decades, and the management team and employees eagerly volunteer at many other events throughout the year.

Walmart During their six-week campaign, which took place in September and October, 14 area Walmarts and two Sam’s Clubs raised more than $200,000.

The team gets pretty creative when it comes to raising funds for the hospital.

Employees at Geneva Walmart held various cookouts and bake sales, as well as a bobbing for apples contest and a “Jail N’ Bail” fundraiser. One manager even dyed his hair pink after the associates reached their fundraising goal.

The Walmart and Sam’s Clubs have committed $1.5 million to name the pediatric lobby and met that goal this year.

RE/MAX RE/MAX Realty Group raised more than $22,000 in 2017 through their Miracle Home Program. This initiative gives associates the opportunity to make a donation to the children’s hospital for each transaction that is made. The agents have made a significant difference through this program and have named a patient room in the new children’s hospital.

Thank you to the top 10 contributing agents!

1. Carla Rosati 2. Mary Shelsby 3. Tim Kayes 4. Jay Benesh 5. Bob Schreiber

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UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU

6. Jack Rosati 7. Silvia Deutsch 8. Colleen Bracci 9. Cindy Rosato 10. Harlan Furbush

Dairy Queen Our three local Dairy Queens are gearing up to sell CMNH balloon icons prior to Miracle Treat Day, when $1 from every Blizzard sold is donated to the hospital.

This past year, they also held a two-week round-up campaign which helped raise an additional $2,000.

In total, their fundraising efforts brought in more than $21,000 in 2017.

They are an extremely dedicated and enthusiastic group and are close to meeting their $75,000 pledge to support the new children’s hospital.

Extra Life Nearly 200 participants raised more than $29,000 for Golisano Children’s Hospital as part of this year’s Extra Life event, a 24hour gaming marathon that unites thousands of players around the world to support Children’s Miracle Network Hospitals.

Dixon Schwabl participated in this year’s fundraiser for the fifth time. Eleven employees gave up a night of sleep to take part in the event and raise $1,692 for Golisano Children’s Hospital.

“It’s an opportunity for us to get involved with our community, but also have fun,” said Arica Marfoglia, one of the organizers of the event at Dixon Schwabl. “We know that the funds we raise are going to an organization in our area, and that’s really important to us.”

Dixon Schwabl employees have raised a total of $21,000 over the past five years as part of the Extra Life event.

Advantage Federal Credit Union For every double hit at a Red Wings home game this baseball season, Advantage Federal Credit Union made a donation to the children’s hospital. The promotion raised $4,700!

Advantage also offers a custom debit card with a “give-back” feature. Every time the card is used, Advantage donates a portion of the profits to Golisano Children’s Hospital. Stop in to a local branch today or visit www.advantagefcu.org for more information.

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WWII Vet’s Gift is Making Children Smile

The gift came with just one request: “Put a smile on kids’ faces.”

That’s all Bud Eberlin of Weedsport asked when he made a large donation to Golisano Children’s Hospital. Eberlin, a World War II veteran, wanted to give children who were undergoing treatment a reason to smile.

Since then, Golisano Children’s Hospital has been regularly hosting ice cream parties — catered by Abbott’s — for patients in the children’s hospital.

Eberlin’s gift has also gone toward supporting the Get Well Network, which allows children to have on-demand television, movies, and videogames in their hospital rooms.

“Of course it’s wonderful to give the kids a reason to smile during the day, but gifts like this go so much further than that,” said Wendy Lane, Wegmans Child Life Program Coordinator at Golisano Children’s Hospital. “When kids are in a positive place mentally, it actually supports their recovery — they get better more quickly and can get back home sooner. We’ve learned here to never underestimate the healing power of happiness.”

Thank you, Bud!

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UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU

In Memoriam: Robert John Haggerty, M.D. Robert Haggerty, M.D., former Chair of the Department of Pediatrics, died on January 23rd. He was 92.

Throughout a career that spanned six decades, Haggerty led numerous child health initiatives that changed the way that pediatricians — and in some cases, entire health systems — practice medicine.

“Without question, Dr. Haggerty was one of the most important and impactful leaders of his generation — and those generations that followed,” said Philip Pizzo, M.D., (SMD, 1970) David and Susan Heckerman Professor of Pediatrics and Microbiology and Immunology and Former Dean of the Stanford University School of Medicine. “He helped redefine the field of pediatrics and child health, developed innovative programs that improved the lives of communities, and connected pediatrics with educators to address the impact of poverty and disparity on the health and well-being of children.”

Haggerty was the third Chair of the Department of Pediatrics at URMC, serving from 1964 to 1975. He oversaw the development of Anthony Jordan Health Center, Oak Orchard Health Center, and Threshold Center for Alternative Youth Services, which gained Rochester worldwide acclaim for its approach to ambulatory pediatrics and its efforts to ensure that underserved children had a medical home. His 1968 textbook (with Dr. Morris Green) Ambulatory Pediatrics was the first to focus on the prevention of illness and care of children with common illnesses and problem behaviors.

In his 1975 book, Child Health and the Community, Haggerty discussed how pediatricians were vital in identi-

fying the behavioral, emotional, and psychosocial problems that accompany — or sometimes cause — various health problems in children. He labeled these problems the “new morbidity,” and the term quickly entered the health professional lexicon. In 1982, the American Academy of Pediatrics (AAP) published a statement on the “new morbidity,” defining the role of pediatricians in addressing these issues; two years after that, the AAP elected Haggerty president. He served from 1984-1985.

In 1998, Haggerty received the Howland Award, considered the most prestigious award in the field of pediatrics, from the American Pediatric Society. In 2004, he received the Alfred I. du Pont award for Excellence in Children’s Health Care. That year, UR Medicine’s Golisano Children’s Hospital also dedicated the Robert J. Haggerty Child Health Services Research Laboratories in his honor.

Two years ago, Haggerty and his family, along with the family of Stanford Friedman, endowed the HaggertyFriedman Professorship in Developmental/Behavioral Pediatric Research, an appointment currently held by Tristram Smith, M.D. “He transformed Pediatric care and leaves an amazing legacy that is embodied in all we do in Pediatrics (and medical care in general). Nowhere is this better reflected than in our own institution and our commitment to patients and families,” said Patrick D. Brophy, M.D., William H. Eilinger Professor and Chair of the Department of Pediatrics, and Physician-in-Chief of the Golisano Children’s Hospital.

Haggerty was predeceased by his loving wife of 64 years, Muriel E. (Protzman) Haggerty. He is survived by his four children, Robert (Julie) Haggerty, Janet (Jim) Morris, Richard (Nancy) Haggerty, and John (Jennifer) Haggerty, along with 10 grandchildren and three great-grandchildren.

His family asks for readers to consider a contribution to the Haggerty/Friedman Fund at Golisano Children’s Hospital, 300 E. River Road, PO Box 278996, Rochester, NY 14627. This fund supports research and training in behavioral and developmental problems of children.

Rochester Gran Fondo brings cyclists out in support of GCH In just its second year of existence, the Rochester Gran Fondo drew nearly 100 participants and countless spectators for a charity bike ride throughout the streets of Rochester.

Presented by the Halleran Financial Group and Full Moon Vista Bike and Sport, the Rochester Gran Fondo featured 100-, 50-, 30-, and 10-mile courses.

Event proceeds were donated to Golisano Children’s Hospital — all told, the event raised more than $11,000 for our patients and families.

The event was held in conjunction with the Rochester Twilight Criterium, a competitive bicycle race, which is also in its second year. We are grateful for the support of this wonderful event!

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Thank you!

Golisano Children’s Hospital is extremely grateful to our community fundraisers!!!!

Ugly Disco

Flower City School #54

Ryan & Lucy DeWispelaere & Zach & Eli DeRoo’s

Orbeth Badmone

Rochester Businessman’s Charitable Golf Classic

Palmyra-Macedon Middle School Family & Careers class

Genesee Valley Kart Club

Chloe Collett

Fairport Music Festival

Greece Arcadia Middle School Taurus T-shirts

Amy Bell Golf Tournament - Premium Mortgage

Holiday Bazaar @ M’s 4300 Restaurant

Mila’s Wings Golf Tournament

US Bartenders’ Guild -Rochester Chapter

Purple Games “give cancer a kick to the grass” - Greece Athena vs. Canandaigua Academy

Jody B’s Studio of Dance Holiday Fair Greece Central School Italian Club Spaghetti Dinner

Push Yourself Event

The Cub Room Whisky Brunch

SEFCU Headquarters

Amelia Personale’s 1st Birthday Party

Stiles Spooktacular 5K event

Friends of Patrick Carr

Northside/Dudley Fall Crawl

Arcadia High School Boy’s Baseball Team

Spirit Halloween/Spirit of Children

Lauren’s Legacy

Rochester Pub Crawl

Holiday Smiles

It’s About Caring for Kids

Amber’s Craft Pumpkin Sales

All American Classic Auctions

No Shave November Seneca County Sheriffs Employee Assoc.

Annalise’s Friends 5K

Zack’s Grill

Durand Eastman School’s Lemonade Stand

Ms. Harder’s Life Skills class from Rush Henrietta

Kittelberger Golf Tournament

Bruce Stone

Craig Winter

MacKenzie Burke

Jenna Vangellow

Team Ali-Gaiters

Cobbles Care Club

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Tim Maizel

Empire State Cruisers

Wayland Elementary School

Pennies for Penelope

Flowers for Julia

UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU

Upcoming Community Events April 7, Ugly Disco

Rochester Riverside Convention Center Come get your groove on from 8 p.m. to 1 a.m. at this ‘70s celebration. The Ugly Disco is a night of fun that features live music, Twister, and more. For more information, visit www.uglydisco.com.

Golisano Children’s Hospital Advancement Office

585.273.5948 | www.givetokids.urmc.edu Scott Rasmussen Sr. Assistant Vice President for Advancement 585.273.5932

April 29, SMILE Lunch

Betsy Findlay Director of Advancement, Special Events and Children’s Miracle Network 585.273.5933

Head to Nazareth College, located at 4245 East Avenue in Rochester, N.Y., from 12:00 p.m. to 4:00 p.m. for a pizza lunch to benefit the Cleft and Craniofacial Anomalies Center at Golisano Children’s Hospital. Come eat pizza, watch the movie Wonder, and share in family activities all while benefitting GCH. For more information contact mtobin9@naz.edu.

Linda Shillabeer Advancement Assistant 585.276.3568

Nazareth College

June 2, Stroll for Strong Kids & 5K

Genesee Valley Park, 1000 East River Road The event, which lasts until 1 p.m., features family-friendly activities, including over a dozen bounce houses, carnival games, photo booths, and much more. The event is presented by Abbott’s Frozen Custard. Register, create a team, and fundraise on the Stroll for Strong Kids website: www.givetokids. urmc.edu/stroll.

June 9, Team Ali-Gaiter Clambake 321 Monroe St. Honeoye Falls

Attendees will enjoy clams, pulled pork, hot dogs, salads, desserts, and drinks.

There will also be live music, raffles, bounce houses, costume characters and pony rides. Tickets are available in advance and at the door. For more details, please contact Jackie Klube at 585.704.4124.

Katie Keating Office Assistant 585.273.5931 Jennifer Paolucci Program Manager, Special Events and Children’s Miracle Network 585.273.5936 Stephanie Sheets Assistant Director of Community Affairs 585.275.2268 Kelly Maley Associate Director for Advancement 585.275.1803

Public Relations and Communications

Save the Date 2018 August 24-25 – Fairport Music Festival August 27 – Golisano Children’s Hospital Golf Classic October 20 – Golisano Children’s Hospital Gala

Sean Dobbin Senior Public Relations Associate 585.273.2840 Jessica O’Leary Public Relations Associate 585.276.4298 Heather Deal Graphic Designer 585.275.7779

Find us on social media: facebook.com/GolisanoChildrensHospital twitter.com/urmed_gch instagram.com/urmed_gch

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University of Rochester Office of Advancement and Community Affairs 300 East River Road PO Box 278996 Rochester, NY 14627-8996

givetokids.urmc.edu/stroll