Strong Kids | 2018 | Volume 3

UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS

Equestrian returns to riding after scoliosis treatment

Knee surgery helps teen cross stage at graduation

2018 VOL. III

Children’s Hospital Chief to lead international research conference

Anyone who has spent any time in our hospital knows that we have a lot of different providers, each with their own area of expertise. We have nurses and social workers, child life specialists and physical therapists… even among us physicians, there are dozens of subspecialists, be they cardiologists, endocrinologists, nephrologists (that’s me!), oncologists, surgeons or hospitalists.

We’re all good at different things. And as you can imagine, we all have slightly different ways of going about our work. But at Golisano Children’s Hospital, we’re all focused on the same ultimate goal: Doing everything in our power to help children reach their fullest potential.

So in this newsletter, we’re turning the spotlight on our friends in the Department of Orthopaedics. Their department is distinct from mine — the Department of Pediatrics — but they’re among our many valuable internal partners, and their team has done amazing work with the children and families in our region.

You’ll read about Holli, a dancer recovering from hip surgery. You’ll hear from Sarah, a teenager who is — quite literally — getting back on her horse after treatment for scoliosis. And you’ll meet Nicholas, who after two knee procedures was able to walk across the stage for his high school graduation.

As the hospital’s physician-in-chief, I’m committed to ensuring that our patients get the best possible care, from a group of providers and subspecialists who are able to work together, seamlessly, day in and day out. We know you don’t expect anything less.

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

The Golisano Children’s Hospital Gala is always a fun-filled event. But this year, honorary chair Lauren Dixon says there might be something a little extra to get excited for, because this year’s attendees will be treated to an evening in a “Retro Circus” with the Rochester Riverside Convention Center transforming into an old-time big top.

But don’t worry, there won’t actually be any lions on hand. Well, probably not.

“This theme is a real showstopper,” said Dixon, who is serving with her husband Michael Schwabl as the event’s honorary chairs. “And I can promise there are going to be a few surprises along the way.”

Dixon and Schwabl, who serve as CEO and president, respectively, of their eponymous Victor-based marketing and advertising agency, have been children’s hospital supporters for more than a decade.

Some years back, a Dixon Schwabl employee had a child who needed heart surgery at Golisano Children’s Hospital, and the company became involved in the hospital’s capital campaign.

“Golisano Children’s Hospital just touches so many people,” she said. “When you see what happens here, and what an incredible place this is — a place that people from all over the country travel to for care — and it’s only 30 minutes from our home, you realize how lucky we are to live in this community.”

Presented by The Cabot Group, which has been the Gala’s presenting sponsor since 2008, the gala features a cocktail reception, dinner, live and silent auctions. Entertainment will feature an All-Star Jam including the band Sixwire from the television series Nashville, and special guests to be announced later this month!

Tickets are $250 per person and sponsorships are available starting at $1,500. For tickets and sponsorships, contact Betsy Findlay at 585-273-5948 or bfindlay@admin.rochester.edu.

What: 2018 Golisano Children’s Hospital Gala Where: Joseph A. Floreano Rochester Riverside Convention Center When: Saturday, Oct. 20.

Tickets: Call (585) 273-5948 or bfindlay@admin.rochester.edu

Are you looking for ways to support the Children’s Hospital? You can help us raise even more money by donating an item or package to be featured in our silent auction. This is a great opportunity to get your friends and co-workers together to create a fun, themed basket; we are looking for new items with a minimum value of $50 or more. Contact Betsy Findlay at 585-273-5948 or bfindlay@admin. rochester.edu for more information.

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The annual Stroll for Strong Kids, celebrating its 22nd year of existence, brought more than 10,000 people to Genesee Valley Park. The region’s largest annual fundraiser in terms of participants, the event raised more than $350,000 for the children’s hospital.

“An absolutely amazing day,” said Stephanie Sheets, URMC Advancement. “The rain held off and everybody came out to support the children’s hospital. We’re so grateful 3

to our participants, volunteers, sponsors, committee, and everyone else who made this day possible.”

Abbott’s Frozen Custard was the event’s presenting sponsor for the seventh consecutive year, while Subway and Zweigle’s provided lunch for participants.

Next year’s Stroll will take place on June 1, 2019.

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James Sanders, M.D., is in the business of helping kids be kids, and as we all know, job #1 for kids is to move. From the time they learn to walk, most kids never seem to sit still until they reach adulthood.

But when children in Rochester and the upstate New York region have conditions that prevent them from moving freely, they often come to Sanders or one of his colleagues in the division of Pediatric Orthopaedics at UR Medicine.

UR Medicine’s Department of Orthopaedics is nationally recognized as one of the best for patient care, clinical research, and residency teaching. Many of its physicians are experienced in caring for both children and adults; as an example, department Chair Paul Rubery, M.D., a specialist in spine disorders, spends fully half his time with pediatric patients.

Sanders is chief of the department’s Pediatrics division, which focuses on caring solely for children – from infancy to the brink of adulthood.

He and fellow pediatric orthopaedic specialists Christopher Cook, M.D., Susan Nelson, M.D., and Natasha O’Malley, M.D., care for childhood musculoskeletal issues of all types, head to toe – from spinal deformities, to limb irregularities, to club foot, and every bone and joint problem in between.

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“An orthopaedic condition can impact a child’s ability to move, to develop physically, and to enjoy their young life – and it can have long-term impact on their overall health and emotional well-being,” Sanders said.

“So it’s vital that they receive treatment as early as possible, along with all the rehabilitation and supportive care that our team can provide. We often see patients for years at a time, and we enjoy seeing these kids as they grow.”

Not so long ago, Sanders was the division’s only physician – but rising demand for pediatric orthopaedic services across the region has meant the addition of new team members, and big investments in technology and patient care facilities at Golisano Children’s Hospital. An EOS x-ray machine is a low-dose x-ray machine that reduces the amount of radiation exposure a child may receive – and since some patients will be followed over a period of years and receive multiple scans, it’s a valuable tool to help protect patients’ health.

“Our Pediatric Orthopaedics program has grown significantly over the last six years,” Sanders said.

“We have moved into our own facilities in a brand new children’s hospital, with operating rooms

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specifically designed and equipped for children. We have pediatric-friendly outpatient offices, and a large group of medical professionals who are very focused on working together to provide children with the care and support that they need.”

In addition to Orthopaedic physicians, the Pediatrics team includes specially trained pediatric nurse practitioners, nurses, physical and occupational therapists, radiologic technicians, and specialists skilled at crafting orthotics for small bodies.

Because orthopaedic conditions can impact other aspects of children’s health, the team frequently partners with colleagues in Pediatrics and Neurology.

Home base is Golisano Children’s Hospital, but physicians provide convenient access to patients across a wide area. There are ambulatory clinics at Strong Memorial Hospital

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and in Brighton, Penfield, Webster and Greece in the Rochester area; physicians also travel to see patients in Horseheads and Auburn, and plans are underway to add outpatient services in Batavia and Ithaca.

Patients come from all over the Finger Lakes region and beyond for the innovative treatments Pediatric Orthopaedics provides. Physicians address musculoskeletal conditions that kids were born with, as well as injuries and diseases that can affect their bone and joint health.

For Nurses on 8 South, the Journey to Healing Starts with a Smile

Pediatric Orthopaedics is widely recognized as the top provider in the region and a national leader in innovating care of spinal and hip conditions. Sanders was an early adopter of two treatments that have now become the standard of care across the nation: • A non-surgical approach to treat infantile scoliosis using body casts: Sanders adopted the procedure in the early 2000s when there was skepticism that it could work. “But we found that it actually does work and helps children with early-onset scoliosis to get the condition corrected without surgery.”

URMC was one of 25 institutions in the U.S. and Canada to participate in the Bracing in Adolescent Idopathic Scoliosis Trial (BRAIST) clinical trial to determine the procedure’s effectiveness in treating scoliosis.

• A magnetic, adjustable rod implanted in the body to treat scoliosis that reduces the number of surgeries required. The MAGEC™ (MAGnetic Expansion Control) Spinal Growing Rod) is a non-invasive treatment for children with early onset scoliosis. Sanders was one of the first in the U.S. to surgically implant the rod to straighten a child’s spine. Then a remote control device is used to lengthen the magnetically controlled rod as the child grows.

While an onlooker might see a child impaired by a condition, Sanders and his colleagues see a child fighting hard to get back to what they love.

“Kids have a life to lead – an orthopaedic condition isn’t going to stop them,” Sanders said. “They don’t have time to let anything get them down. That’s what’s so fun about them.”

Helping kids get back on the move – and guiding their development toward a healthy, active adulthood – keeps this team going.

The first time Nyckiyah Mulkey R.N. meets a new patient on 8 South — which serves as the pediatric orthopaedics inpatient ward, among other things — she often finds that there is more to be addressed than meets the eye. Over the course of her five months on the job, she’s found that a lot of children are fearful and overwhelmed during their stay. So she makes it her ultimate goal to not only heal them, but also to put a smile on their faces.

An 18-bed pediatric medicine unit, 8 South primarily cares for orthopedic and orthopedic trauma patients. Many patients recovering from hip, knee and spinal surgeries spend their time on the unit, which also cares for children with endocrine disorders, especially newly diagnosed diabetics. Adolescents with eating disorders and other psychological diseases are also seen here.

What they share is that they’ve all recently gone through one of the most trying experiences in their young lives. Here, they attempt to take their first steps on the road to recovery.

“In pediatrics, it’s important to recognize that kids are being pulled away from the ability to lead normal lives. They need a lot of emotional support before they can get back on their feet,” said Mulkey. “What I love most is seeing how each patient transitions from admission to discharge. It’s amazing to be a part of the process and watch children become themselves again while taking real steps toward recovery.”

This means Mulkey and the other nurses do much more than just administering medicine or treatment.

Acting as a pillar of emotional support for a child in a time of distress is essential to helping them keep their morale up and increases the chances of a full recovery.

“It’s all about making it the best possible experience for everyone involved,” says Denise Clough, Senior Nurse Manager of 8 South. “We strive to support our patients and their families in every way that we can in hopes to see many smiles along the way!”

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The Comeback

Dancer rallied from hip surgery four years ago – now, she’s doing it again

Grimacing, Holli Morrison steadies herself and takes a deep breath. She shifts her weight and tries to move her right leg over a few inches more, toward the pedal on the other side of the stationary bicycle.

Another wince, and she stops.

“Sorry, it’s just really...” she trails off.

Her physical therapist purses his lips and nods his understanding.

‘A Mental Battle’

When it comes to moving your lower body, virtually everything requires help from your hips. Taking a step?

You’ll need your hips for that. Shifting your weight while seated? Yeah, that’s mostly hips, too. Getting out of bed?

Good luck doing that without your hips.

On the day that Morrison, 20, pushed herself through a basic workout at the Clinton Crossings rehab center, she was just three weeks removed from a two-part surgery that, in essence, totally re-made her left hip. A competitive dancer who is entering her senior year at The College at Brockport, Morrison faces an intense rehabilitation that could take more than a year.

The main thing she has going for her is that she’s done this before.

“It was definitely a mental battle the first time, because it meant I had to stop dancing. But I knew if I didn’t get the surgery done, I wasn’t going

to be able to ever go back to it,” she said. “And this time, I know what to expect, so I’m going to push myself a little more.”

On her first go-round, four years ago, Morrison had been going through her usual dance routines when she felt something catch in her right hip. It was just a twinge at first — a feeling like her hip was caught on something when she’d stand up.

But it worsened to the point of pain, and soon, she had to stop dancing.

Over the next few months, the discomfort got worse and worse, and eventually, she couldn’t even sit down for more than a few minutes without having to shift her weight or stand back up again.

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“It was definitely a mental battle the first time, because it meant I had to stop dancing. But I knew if I didn’t get the surgery done, I wasn’t going to be able to ever go back to it.”

As the pain got more severe, she saw three different doctors before finding her way to Brian Giordano, M.D., at the University of Rochester Medical Center. Giordano, the co-director of the Hip Preservation Program — alongside Christopher Cook, M.D. — realized that she had a torn labrum, caused by a combination of developmental hip dysplasia and heavy wear-and-tear from years of dancing.

“Holli was competing at a very high level, there was no way she was going to be able to push through that kind of pain,” said Giordano.

“Without a surgical intervention, she wasn’t going to be able to dance again.”

To get Morrison’s hip healthy again,

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Giordano and Cook collaborated on a two-part procedure: First, Giordano performed an arthroscopic surgery to repair the torn labrum and address various issues inside the joint, and then Cook performed a pelvic reorientation surgery, which requires several cuts into the hip bones and a rotation of the hip socket so it aligns with the ligament and tendon.

“Clinically, the surgery went very well,” said Cook. “But for Holli — and for anyone who wants to dance or play any sport with the same rigor as before — the surgery is really the easy part. Rehab is a long, long road.”

Road to recovery

Morrison’s road started with some basic physical therapy. She was on

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crutches for three months, a challenge exacerbated by the fact that she was in the midst of her sophomore year of high school; her classmates had to carry her books around.

Once her incision healed, she was able to move on to aquatic therapy. Throughout the process, she continued to work hard, educating herself on her condition and the fastest path to recovery.

“The doctors were amazing,” she said. “They were so receptive to all my questions. They listened, and they answered everything — they never make you feel like you’ve got to rush out of your appointment.”

After about 5 months, she was able to start jogging, and after 8 months, she returned to dancing. But it wasn’t

easy, at first.

“That was a mental struggle too, because you go back and your body isn’t quite the same,” she said. “That’s where you really have to work to get back to what you were doing before.”

It took a little over a year from the date of the surgery to get to that point. But once Morrison was there, she quickly returned to her peak.

“She’s incredible,” said Kelly Adler, A.T.C., who works alongside Giordano and Cook in the Hip Preservation Program. “If someone told me that I’d need this much rehab, I don’t know if I could do it.”

A familiar trial

As she recovered from her first injury, Morrison was warned that she’d likely need the same procedure on her left hip at some point in the future, especially if she continued to dance at a high level. But returning to dance was the whole point of the operation to begin with, so Morrison pushed on, undeterred. And when the time came four years later, she was ready.

Back at the rehab center, her left hip having undergone the same surgery as her right, Morrison steels herself once more. With the encouragement of her physical therapist, she finally shifts over on the stationary bike and reaches the other pedal. It took nearly 2 minutes to get on the bike, but now, she’s ready.

Morrison starts to pedal. Her face still carries a determined look. But now, behind it, there’s a smile.

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It wouldn’t take much. A slight misstep or a weird angle on the pavement, and Nicholas DiBella would fall.

His knees, which had given him trouble since birth, would often give out without warning, and he’d tumble to the ground. Even when he was staying on his feet, there was pain. His parents needed an adultsized stroller to bring him anywhere — even a short walk through the park was too much for him to handle.

And then there were the aesthetics.

His kneecaps had grown out towards the side of both of his legs, and would often shift suddenly when he walked. During the summer, his parents usually dressed him in long shorts, to spare him the gaze of onlookers.

“It was really quite jarring to look at,” said Evelyn DiBella, Nick’s mom.

“His kneecap would push out to the side, and he’d have to straighten his leg out, and then it would pop back into place.”

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Patients with Down Syndrome often struggle with instability in their joints. For Nick, the problem got steadily worse as he aged, and soon, his parents were looking for help.

Their search led them to Golisano Children’s Hospital.

knee first, rather than doing both procedures at once.

“We took things one side at a ‘One side at a time’ time, because Natasha O’Malley, M.D., first met when you’re Nick in 2016. Nick had been seeing rehabbing UR Medicine providers for two years, a knee, you but when it became obvious that really have to surgery was going to be necessary, depend on O’Malley — who is experienced your other leg in treating these conditions — was for support,” called in. said Emily O’Malley’s team set out to plan Hermann, Nick’s surgery, with the goal of N.P., who putting all the important parts of his treated Nick knees — the tibia, femur, tendon, alongside O’Malley. and ligament — back into alignment, His first surgery took place in as years of the abnormal growth 2016. O’Malley made cuts to his had pushed them all out of whack. femur and tibia so they could be He’d also developed “knock knees,” realigned properly, re-positioned his meaning his knees bent inward when tendon, and performed a ligament he stood. reconstruction. His healing wasn’t O’Malley decided to treat his right perfect, though, so he returned the

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following year for an additional procedure — a new plate and bone graft to improve the healing process.

Throughout the process, Nick endured a grueling rehab, first with home visits from a physical therapist, and then additional appointments in an outpatient office.

“I often tell families that I do one day of work, but they do a lot more,” said O’Malley. “But Nick and his family were both very determined. They were committing to getting him better.”

The next time Nick saw O’Malley, he pointed straight at his left knee. The implication was obvious.

“He’s pretty much nonverbal, but you can understand him through his looks,” said Evelyn DiBella. “He wanted that other knee done.”

Crossing the stage

The realignment surgery for his left knee took place in January, and since then, Nick has surprised everyone with the speed of his recovery.

Today, he’s as comfortable as ever, and his steadilyincreasing confidence in his ability to walk has led to a happier outlook and a brighter personality.

“I have a picture of him playing challenger baseball, and he had the biggest grin on his face I’d ever seen. It was like I didn’t even know him,” said Evelyn DiBella.

One of his biggest accomplishments came in June, when he graduated from Hornell High School. With family and friends looking on, Nick cracked another big smile as he walked across the stage to collect his diploma.

“It’s like nothing ever happened to him,” said Evelyn DiBella. “It’s amazing — he’s walking up and down stairs, and he’s happier and more social. I really can’t say enough about what Dr. O’Malley has done for him.”

With a sterling pedigree that included a pediatric orthopaedic fellowship at the Children’s Hospital of Philadelphia, and additional time at Oxford University Hospitals in the United Kingdom, Susan Nelson, M.D., had several career options in front of her.

After speaking with one of her mentors in Philadelphia, she chose to come to Rochester.

“I really liked the feel of the community,” said Nelson. “And it’s a growing practice, which is appealing to any new surgeon coming in. There’s definitely opportunity to build something here.”

Nelson is the newest faculty member in Pediatric Orthopaedics, having joined Golisano Children’s Hospital earlier this year. A native of Canada, she earned her medical degree at Queen’s University in Ontario, and holds a Master’s in Public Health from Harvard University. She went on to complete her orthopaedic surgery residency at the University of Saskatchewan and is a fellow of The Royal College of Surgeons of Canada.

Though she’s adept treating a variety of pediatric orthopaedic conditions, including spine and hip problems as well as fractures, Nelson has taken a particular interest in cerebral palsy – management of the disease was the primary focus of her fellowship in Oxford.

She’ll be exploring the feasibility of a comprehensive cerebral palsy program in Rochester. Patients with cerebral palsy often need treatment from multiple providers including orthopaedists, neurologists, developmental and behavioral pediatricians, rehabilitation medicine, physical and occupational therapists, nutritionists, and more. These complex patients could benefit from a multidisciplinary one-stop approach.

“We have the people here and they’re all doing fantastic work, but we need to look at opportunities to better coordinate all of our efforts,” she said.

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Scoliosis Treatment Helps Equestrian Return to Riding Adolescence can be a challenging time, but everything seemed to be coming together for Sarah Bury: an excellent student, the Liverpool, N.Y. eighth-grader was also thriving as an equestrian, a sport she began at age 8 that had become her life’s passion. She was looking forward to high school, college, and building her equestrian skills.

But a check-up in 2013 revealed that Sarah had scoliosis, a curvature of the spine that affects 2 to 4 percent of adolescents. Sarah’s long hair and bulky winter clothing had obscured the problem from her parents’ view for months, but now they had to move quickly, because the scoliosis was, too.

Not present at all in the previous year’s check-up, the curvature was already at more than 45 degrees.

Sarah’s parents Lydia and Keith began searching the internet for answers, which only deepened their worries. “Do not Google your child’s illness,” Lydia said. “As parents we were freaking out and we had a 13-year-old who was also freaking out.”

They began searching for physicians 15

online, and one of the specialists they found was Paul Rubery, M.D., Chair of the Department of Orthopaedics at the University of Rochester Medical Center and a spine specialist.

Rubery was listed as one of the best doctors in the country for scoliosis, so Sarah’s family made an appointment with a doctor in their area and with him.

“He was our second option for a doctor, and after we met him we never went back to the first,” Lydia recalls.

In addition to expertise, the family valued his compassion and communication.“Everything clicked from the first appointment; he was direct and informative,” Sarah’s father Keith recalled.

“He connected with Sarah directly,” Lydia added. “He made it clear that she is his patient. He told us what we needed to know, but his focus was on her and she respected that. After we met with him, Sarah said to us, ‘That’s my doctor.’”

“A child naturally wants to be involved in their care,” Rubery said.

“We keep parents involved in any decision, but it’s really important for a young child to be aware of what’s going on, and to have their questions answered and their fears allayed.”

Rubery recommended fitting Sarah

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with a brace to try a non-surgical solution first. “He told us, ‘We are in a serious place, but if we don’t try a brace first we will always wonder’,” Lydia said. “He tells you exactly how it is.”

Though the family traveled nearly two hours for their appointments, they appreciated the convenience of having all necessary services in one building at UR Medicine’s Clinton Crossings Orthopaedics. “She needed an MRI, she needed to be fitted for a brace, and it was all in the same building, with his office upstairs,” said Lydia. “We were ready to get going on treatment and Sarah got fitted with a brace that day.”

On their trips to Rochester, the family also visited one of the colleges on Sarah’s short list, Rochester Institute of Technology.

Sarah wore the brace through the summer of 2013 at night, but the curvature progressed and surgery became essential. Uncorrected, it could have caused permanent disability and threatened Sarah’s health. The curvature was compressing Sarah’s rib cage and affecting her breathing; left untreated, it could have impacted her cardiovascular system.

“Dr. Rubery explained they were going to straighten out my spine using rods and screws that would stay with me the rest of my life,” Sarah said.

Sarah took the news about surgery

the way she takes a jump on a course: eyes forward and steady in the saddle.

“I was scared but I knew I had to do it,” Sarah said. “I knew it was the right thing for me. I cried for a few minutes and then faced it head-on: ‘This is going to be me now.’ ” “You worry with a child’s spine,” Lydia said. “Her biggest concern was, ‘Am I going to ride a horse again?’ It was her life.”

Since age 11, Sarah had competed in the Interscholastic Equestrian Association, a national non-profit organization that gives riders in grades 6-12 an opportunity to try equestrian sports. The competition format builds problem-solving skills as well as riding skills: Riders are matched with horses on the day of the event, and quickly have to build rapport with an unfamiliar horse and lead it through flat courses and jumps to score points.

Riders with good form – including a straight, graceful back – get the most points.

“It’s very hard as parents to hand over your child and feel helpless. But there’s that trust factor – he earned our trust. And I felt like we were in the hands of experts,” Lydia said.

Scoliosis had created significant curvature and rotation of Sarah’s spine. The 5-hour surgery immediately increased her height by 2 inches, but with her back suddenly straightened, Sarah had to learn how to hold her head up again. Her years riding horses had developed strength in her torso,

which helped her recover. Rubery prescribed a series of post-operative stretches for her to do at home, and she followed them to the letter.

Rubery told Sarah it might be a year before she could ride a horse again, but she surpassed all expectations. She got her surgeon’s permission to ride “low and slow”

by New Year’s. Lydia remembers the confidence the family felt as Rubery gave her the news: “‘You can do this,’ Rubery told Sarah, then he looked at us and said, ‘And you’re going to let her.’”

“Riding again, I was smiling the whole time,” Sarah said. “I never missed a beat, and I remember just going around and around.”

She did have to wait a while to jump, but that came back to her too.

Sarah returned to IEA competition in February 2014 and qualified for regional finals, then the national finals. She’s since qualified for regionals every year, and in 2017, qualified for nationals again, placing eighth. She competed at nationals in 2018 in Syracuse by special invitation, as the rider with the highest IEA competition points in New York state.

“Like many of my young patients, Sarah has tremendous energy and tremendous passion to pursue her talents in school as well as a particular sport,” said Rubery. “I had confidence that she could go back to her chosen sport after her surgery. She really

was the key to this success; she had the energy and the drive to follow her recovery plan so that she could get back on her horse and handle riding and jumping. Following her surgery, she’s been phenomenally successful as an equestrian.

“Additionally, some of the newer technologies we have to treat scoliosis benefited Sarah; these advances allow us to do less-invasive surgeries that have reduced impact on the natural anatomy of the spine. These techniques make it possible for patients like Sarah to recover well and go back to the things they love doing.”

Now 18, Sarah is looking ahead.

This fall, she’ll begin a 5-year master’s program in applied statistics and actuarial science at RIT on an academic scholarship. And she’ll join the college’s riding team based out of Lehman Farms.

The scoliosis and the surgery to correct it are fading from memory, and she’s back to being Sarah.

“As far as my life going forward, I am a completely normal person,” she said. “We forget it ever happened for weeks at a time.”

Sarah long ago threw away the brace she wore for months, along with any photos of her in it. The family will show you the before-and-after X-rays of Sarah’s surgery, though.

The dramatic change to Sarah’s spine catches your eye – and after meeting Sarah, you get to see what the surgery has made possible in the years since, and the years yet to come. That picture couldn’t be more clear.

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ENDOWMENTS 101

How Your Gift to Golisano Children’s Hospital Could Help Patients For Generations to Come Endowments are incredibly important in providing support and care for our patients. For this story, the first of a series that will publish in the Strong Kids Newsletter, we sat down with Patrick Brophy, M.D., the children’s hospital’s physician-in-chief, and Doug Phillips, Senior Vice President and manager of the University of Rochester’s endowments, about the possibility of raising more endowed funds to support Golisano Children’s Hospital.

What is an Endowment?

Doug: Endowments provide a permanent and stable annual revenue for programs selected by the donor. The original gift remains intact, and approximately 5 percent is expended annually.

In order to create an individual “named” endowment, a donor will need to have the ability to give at the major gift level. However, smaller gifts from many donors can be pooled into a single endowment.

Why are endowments important to Golisano Children’s Hospital?

Patrick: Endowments provide support for essential things like teaching, research, lectureships, scholarships, and fellowships, and they also help us attract leaders that can build programs that will take us to the next level, nationally. If you’re a top physician or researcher who has the option of working virtually anywhere, endowed professorships, which help to assure compensation and resources are permanent, are a differentiating factor in recruiting. The hospital needs more of them to draw the best and brightest people to Rochester.

Can you give a specific example of how we’re using endowed funds today?

Patrick: Sure. In our country right now we have an opioid crisis, and part of it is how we deal with pain management — not just in adults, but kids, too. Endowments can help fund programs like music therapy, which has been clinically proven to help with pain management and can be an alternative to medication. So that’s been a fantastic thing we provide for kids and families. But we’d love to expand that program and continue to develop other alternatives to pain medicines.

Why place an endowment rather than giving a gift that the hospital can spend immediately, to help today’s patients?

Doug: Many donors create endowments because they care about an organization’s mission, recognize the organization is permanent, and are interested in assuring that the mission continues long after they are gone. Some donors prefer to give a gift that will have a maximum impact today, and that’s perfectly fine. But we should also recognize that our faculty, physicians, students and facilities could not today exist were it not for the support of past endowments that were started — in some cases — over 100 years ago. And 100 years from now, we’ll be saying the same!

To learn more about endowments, contact the Golisano Children’s Hospital’s Advancement team at (585) 273-5948.

Endowment spotlight: Bill and Geraldine Hogan When Bill Hogan’s wife, Geraldine – “Dee” to her friends, passed on Labor Day of 2017, the world lost a unique and spirited individual. Married for 46 years, Bill wanted to do something that would benefit the community and honor the memory of Dee. He decided to create an endowment in her name, using their combined resources to help people, something he knew Dee would have loved.

Dee, a teacher of 45 years always loved caring for, inspiring, and nurturing young people, and as a tribute to her passion, Bill decided it would be fitting for the donation to go 17

to Golisano Children’s Hospital.

Bill saw firsthand the far-reaching impact that he and his wife’s generosity would have when he was at the bank situating the finances needed to set up the endowment. When he mentioned to the woman helping him that the money was for the children’s hospital, she became emotionally overwhelmed and broke down in tears, as just a few weeks prior, her granddaughter had received essential treatments at the hospital. She thanked Bill for his generosity and his willingness to make a difference in the lives of others.

When asked why people should

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make endowments like the one he made in honor of Dee, Bill said it could be summed up into two simple words: “gratitude” and “memory.” Bill believes if you have the means to help others, you should — a philosophy that Dee always lived by.

His endowment will not only help the children of Rochester but also pay tribute to Dee’s ideologies and legacy. Children were always close to her heart, and now the memory of her care and compassion will live on for years to come.

B&L Wholesale commits $250K to children’s hospital B&L Wholesale held their annual golf tournament in support of Golisano Children’s Hospital on June 21, pledging $250,000 in support of children’s hospital programs and facilities. The company, which distributes residential roofing, siding, windows, doors, and more, has now given more than $2 million since it first began supporting the children’s hospital in 1995.

Patrick Brophy, physician-in-chief at Golisano Children’s Hospital, was on hand to thank the company for their

generous support, as was Jakob O’May, a teenager who has received treatment at the children’s hospital for mental health issues.

“This is a wonderful example of a company that really goes the extra mile for the children in our region,” said Brophy. “They are model corporate citizens, and we couldn’t do the work we do without the support of places like B&L.” Thank you to B&L Wholesale for more than two decades of support!

From left to right: Don Tomeny, Patrick Brophy, M.D., Michael Scharf, M.D., Jakob O’May, left, spoke at the event.

Carla LeVant, L.M.S.W., Lisa Chatt, Bob Latour, and Art Finocchario.

Patrick Brophy, M.D., the William H. Eilinger Professor and Chair of Pediatrics at the University of Rochester Medical Center (URMC) and the physician-in-chief at UR Medicine’s Golisano Children’s Hospital, has been named Program Committee Chair for the 2020 and the 2021 Pediatric Academic Societies (PAS) Meeting, the preeminent pediatric research conference in North America.

The meeting is a partnership between four pediatric organizations — the American Pediatric Society, the Society for Pediatric Research, the Academic Pediatric Association, and the American Academy of Pediatrics — and draws several thousand pediatricians from across the continent each year.

“Dr. Brophy was chosen for this very important position from a list of a dozen excellent applicants,” said Steven Selbst, M.D., PAS Executive Committee Chair. “He was chosen because of his strong leadership skills – including his recent appointment as a Department Chair – and committed involvement with PAS for many years.”

Brophy also hopes to use the role to bring more attention to child health research and related public health issues, and to advocate for increased funding in the field.

“This meeting gives you a pretty significant pulpit from which to bring forth some of these issues, and allows you to engage leaders across enterprises,” said Brophy. “It’s an opportunity to really be a voice for child health research and advocacy.”

The 8th Chair of the Department of Pediatrics, Brophy joined URMC earlier this year. A board-certified pediatric nephrologist, he is President of the American Society of Pediatric Nephrology, where he also previously served as Program Committee Chair for the society’s annual meeting.

Brophy said he was looking forward to working closely with colleague Kate Ackerman, M.D., Senior Vice Chair of Innovation & Integration and Associate Professor of Pediatrics, Critical Care, who serves on the PAS Operating Committee.

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Thank you!

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Upcoming Community Events Aug. 24 & 25, Fairport Music Fest Lift Bridge Lane, Fairport This fun-filled event located along Fairport’s Liftbridge Lane, is great for the whole family! Enjoy two days of good music and food for a great cause. Fairport Music Fest has impacted Golisano Children’s Hospital in a number of ways and is committed to supporting a pediatric cardiac operating room in Phase II of the new Golisano Children’s Hospital. For more information visit: www. fairportmusicfestival.org

Aug. 27, Golisano Children’s Hospital Golf Classic Monroe Country Club, the Country Club of Rochester, and the Oak Hill Country Club on the West Course Golfers from across the Finger Lakes region will come together to play for kids at the 19th annual Golf Classic.

Sept. 15, Running to Remember 5K More information on this event coming shortly! Follow the event’s Facebook page for more info: facebook.com/runningtoremember5k or call Barb at (315) 5764529 or Kelly at (585) 734-1012 for more details.

Oct. 13, Genesee Valley Hunt Races 3320 Nations Road, Geneseo The 89th running of the Genesee Valley Hunt Cup will begin at 10 a.m. and go until 4 p.m. A portion of the proceeds from the event, which features a steeplechase race and fun for the entire family, benefit Golisano Children’s Hospital. For more information please visit www.geneseevalleyhunt.org

Oct. 20, Golisano Children’s Hospital Gala Joseph A. Floreano, Rochester Riverside Convention Center The 31st Annual Golisano Children’s Hospital Gala will feature a retro circus theme! See page 2 for more details.

Nov. 2, Anthony Poselovich Silent Auction Artisan Works 565 Blossom Road, Rochester

Golisano Children’s Hospital Advancement Office

585.273.5948 | www.givetokids.urmc.edu Scott Rasmussen Sr. Assistant Vice President for Advancement 585.273.5932 Betsy Findlay Director of Advancement, Special Events and Children’s Miracle Network 585.273.5933 Linda Shillabeer Advancement Assistant 585.276.3568 Katie Keating Office Assistant 585.273.5931 Jennifer Paolucci Program Manager, Special Events and Children’s Miracle Network 585.273.5936

Public Relations and Communications 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

The 9th annual Anthony Poselovich Silent Auction will feature up to 300 items, with items ranging from an Amerks suite box to spa gift certificates. This event supports the Anthony Poselovich Foundations commitment to our area kids through their named space of a sibling room in the new Golisano Children’s Hospital. Tickets are this all you can eat event are $50 and available through their website: www.anthonyposelovichfoundation.org

Caleb Lee Public Relations Intern

Save the Date 2019

Find us on social media:

June 1 – Stroll for Strong Kids

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

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