Strong Kids | 2019 | Volume 1

UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS

Golisano Pediatric Behavioral Health & Wellness building set to open in 2020

Social work receives $1M gift

2019 VOL. I

Radiothon raises $251K

Dear Friends

Golisano Children’s Hospital

Board of Directors At the end of 2018, we asked you to consider supporting the children in our region by making a donation to our hospital. It’s something we do every holiday season — we hope that as you buy gifts for your loved ones, you’ll also think of children who may be needing our services in the year to come. We rely on these donations to be able to provide the most advanced, compassionate care to children and their families.

This year, I was overwhelmed by the response we received. The generosity of our community continues to amaze me.

The donations that you gave will stay right here at our hospital, helping us to attract the best doctors, utilize the most cutting-edge technology, and start new research initiatives aimed at finding new, lifesaving discoveries.

In the past few months, many individuals have also let us know about their plans to include our hospital in their will or living trust. These gifts are so important, because they allow our team to plan new initiatives for the future, with the confidence that we’ll have the resources to make them happen. I am always especially touched when members of our community choose to give back in this way.

On behalf of everyone who works at the hospital — the nurses, child life specialists, social workers, and beyond — thank you for your continued generosity. It is because of you that our hospital is a place of healing and hope for so many children in our community.

Sincerely,

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

Mike Goonan, Chair* Mike Buckley Al Chesonis Jeffery Davis Roger B. Friedlander Jay W. Gelb John Halleran James E. Hammer Howard Jacobson Jennifer Johnson Todd Levine Scott Marshall Gary Mauro 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

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

Ex-Officio

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 John L. DiMarco II 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

Rochester Police Department Brightens Children’s Spirits Minutes before 6 p.m., the atmosphere in the children’s hospital was electric.

Patients — all smiling, some jumping up and down with anticipation — were gathering in the play deck and finding a spot by the windows.

The parents in the room were getting their phones out, getting ready to hit “Record.”

Below, dozens of police cars lined the street.

“I’m so excited!” said one child. “There are so many of them!”

The Rochester Police Department was preparing for the inaugural Good Night Lights event. On three Wednesdays in December, officers pulled over next to the children’s hospital and flashed the lights on their vehicles to say “good night” to the children watching above.

Officer Jason Blanchard and Lt. Richard Waldo came up with the idea after hearing about similar events at other children’s hospitals across the country. University of Rochester Public Safety, as well as other police and fire departments from across the region, joined in as word spread about the initiative.

“We wanted to let the kids know someone was thinking of them, and help distract them from what they are going through,”

said Waldo. “To be uplifting to the families during the holiday season – that’s what it was all about.”

Each night of the event, children received light-up glow sticks so they could wave back to the officers below. For many children and their families, the event was the highlight of their hospital stay.

“It almost felt like a gift for us to be able to witness something like this,” said Samantha Gardner, whose daughter, Tyler, was in the hospital over the holidays. “It will be a memory we will cherish.”

The officers hope to host a party for children who are in the hospital this winter, and plan to resume the Good Night Lights project over the 2019 holiday season.

“Lt. Waldo and I have both been in law enforcement for almost 20 years, and in that time, there are a few things that stick out in my mind,” said Blanchard. “This is certainly one that we will carry with us for years to come.”

On three Wednesdays in December, officers pulled over next to the children’s hospital and flashed the lights on their vehicles to say “good night” to the children watching from above.

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‘You are not alone’

Her bed was one of the things that Lauren Opladen missed the most. So when she finally got back after a month away from home, that’s where she headed.

The sheets were cool and soft. The blankets, heavy and comforting. She felt safe. And as she fell asleep, she thought happily that she might never want to get out of bed again.

But by morning, something profound had changed. She still didn’t want to leave her bed, but the warm, content feelings were gone, replaced by those far more ominous. And as the morning wore on, they became more and more acute.

No, she didn’t want to get out of bed. She didn’t want to move.

She didn’t want to do anything.

She didn’t want to live. *** People who have been close to a suicide — those who have had either a family member or close friend take their own life — are at much higher risk at attempting it themselves.

“It can definitely be a red flag for us as counselors,” said Matt Drury, therapist in the partial hospitalization program at Golisano Children’s Hospital.

When Lauren attempted to take her own life, six years had passed since her older brother, Joshua, had taken his at age 17.

Four years later, Lauren’s father — for whom she had been a primary caretaker — passed away from Amyotrophic Lateral Sclerosis (ALS). Her family then moved from Greece to Spencerport, upending her social life. And after a surgery for congenital hip dysplasia, which required a year of rehabilitation, Lauren was unable to play soccer, which had been her primary escape for years.

“A lot of things were just going downhill,” she said.

But at this crucial period in her life, with many of her safety nets falling apart, she did the one thing that comes as difficult to many teens in a similar position: She sought help.

“I had a close friend who was also struggling, and we both told each other the same thing: If it gets bad, make sure to speak up,” said Lauren. “A water bottle can only fill up so much before it overflows.” ***

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McKenzie Smallcomb, Lauren Opladen, and Matt Drury

Lauren’s first attempt to get help came in the form of Golisano Children’s Hospital’s partial hospitalization service, a program where teenagers struggling with suicidality and other significant mental health concerns stay in the hospital from Monday through Friday during school hours. The program accommodates 22 teens at any given time — that number will increase to 33 once the new Golisano Pediatric Behavioral Health building opens later this year — and priority is given to those who are struggling with severe depression but can safely stay at home during evenings and weekends.

The program is a mix of various therapies, including one-on-one sessions, group discussions, and activity therapy, such as music or art therapy. There’s also some classroom learning mixed in — care providers coordinate with the student’s 5

teachers to ensure they don’t fall too far behind on schoolwork.

One major goal of the program is to establish a solid safety plan for when suicidal thoughts set in, which means identifying supports and developing coping mechanisms.

“We go through warning signs, triggers for major stressors, and talk about who is their major support system,” said Drury, who served as Lauren’s primary therapist when she was in the program.

Once equipped with these coping tools, some patients get their feet underneath them and are able to return to care in an outpatient setting. Others need more support.

Lauren initially spent time in partial hospitalization, but her depression continued to grow worse, so she was admitted into the inpatient unit, where

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patients spend 24 hours a day. She remained there for a month before she was moved back to the partial hospitalization.

She got home that first night, missing her bed. That next day was when she woke up, wanting to end her life. She attempted suicide that morning. *** After the attempt, she spent another month back in the inpatient unit. She engaged in more work, more discovery, and more treatment. It’s hard for her to put her finger on what, specifically, helped her symptoms improve. But that month, she says, was a turning point.

“The staff just really helped me,” she said. “They were a big part of my recovery because I really gained a connection with many of the people there. I knew I could talk to them — even now, I’ll go and visit

Selling bracelets like those pictured above, Lauren raised $850 for mental health programs at Golisano Children’s Hospital.

them sometimes.”

Upon release, she transitioned to an outpatient care setting, and began seeing a therapist once a week.

“It is important to meet a patient where they are at, identify what progress they’d like to achieve in treatment, and engage in safety planning to help prepare for more challenging days. Lauren engaged well and worked to identify activities to engage in that she enjoyed to help mediate challenging events or stressors,” said McKenzie Smallcomb, Lauren’s clinician at the children’s hospital’s Behavioral Health and Wellness Outpatient Services. “Lauren exhibited many strengths that contribute to resiliency including empathy for others and humor. She was always talking about being there for others.”

With Smallcomb, Lauren was able to expand on the safety plan that she’d

developed with Drury. Now 18 years old, she’s finishing up her senior year at Spencerport. She works at Chick-Fil-A on a near-full-time basis, and she just started coaching young goalies at the Rochester Rhinos soccer academy.

Over the summer, she held a fundraiser for the Division of Child and Adolescent Psychiatry at Golisano Children’s Hospital, selling bracelets on the beach with inspiring messages, such as “You can do this” and “You are not alone.” She raised more than $800.

And not too long ago, she got a pit-bull mix named Chief, who she adores and walks every day. This fall, she’ll attend The College at Brockport, where she plans to study nursing. Working in a pediatric behavioral inpatient unit has crossed her mind.

The coping skills she learned have been

suiting her well as of late. But Lauren knows that her symptoms could come back. And that’s why, 18 months after her suicide attempt, she’s sharing her story: She wants anyone who reads it to do the same thing if they are struggling.

“You have to tell someone,” said Lauren.

“No one can do it alone.”

Fortunately, she’s not afraid to ask for help.

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Golisano Behavioral Health & Wellness building will bolster a growing division

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

Michael Scharf, M.D., Chief of Child/Adolescent Psychiatry

The headlines were everywhere, forecasting a major problem.

“Chronic Mental Health Issues in Children Now Loom Larger Than Physical Problems,” read one such missive in the Journal of the American Medical Association in 2012.

And in parallel, another set of headlines, showing that the demand for services far outweighed the supply.

“Growing Need for Pediatric Mental Health Services,” read a 2018 report from the New York School-Based Health Alliance.

Rochester, for its part, was in better shape than most places, but still had long wait lists for certain services. Children, here and everywhere, were hurting.

But then, in fall 2017, a lifeline: Tom Golisano announced a $5 million gift to help establish the Golisano Pediatric Behavioral Health & Wellness building. The building — the remainder of the project will be funded through additional philanthropy and by URMC — is scheduled to open in January 2020, and will enable our child behavioral health leaders at URMC to create an entirely new service line while expanding two others, moves that are sure to help mitigate the need for pediatric mental health in the region.

It also represents the culmination of several decades of work by the Division of Child & Adolescent Psychiatry. While the need for pediatric mental health services has been on the rise all over the country, the Rochester region has managed to meet its demand better than many other areas.

Consider: When Michael Scharf, M.D., now the Chief of Child/Adolescent Psychiatry took over as senior medical director in 2009, the division had only five child psychiatrists on faculty.

“Today, we’ve got 16,” said Scharf. “When you look at cities our size, to have that number of child psychiatrists is extremely rare, and it may even be unique.”

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Range of services

“That program is where our wait list is the most concerning, given the urgency of need for those youth With 24 Psychiatry and Psychology faculty members — and families,” said Scharf. “But with the new facility, I’m along with a variety of other care providers including nurse hopeful we can greatly reduce the number of children practitioners, mental health counselors, social workers, family DIVISION OF CHILD AND ADOLESCENT ATtoTHE waiting for this service,PSYCHIATRY hopefully all the way zero.”UNIVERSIT and marriage therapists, creative arts therapists, and nurses — • Inpatient Services, also located in the Psychiatry building the division has been able to staff four main service lines. of URMC, is a locked facility for children 5 to 18 with acute psychiatric issues. There are 24 licensed beds, and • The division’s Outpatient Services, called the Pediatric patients stay in this facility for an average of 10 days. A Behavioral Health and Wellness Service, is the largest multidisciplinary team provides a variety of daily therapies, children’s mental health ambulatory service in the with two teachers on hand to ensure the patients stay on region. The service is heralded for providing evidencetrack with their education. based assessment and treatment in a developmentally• The Pediatric Behaviorial Health Consultation and appropriate, family-driven, strength-based approach to care Liaison Service provides consultation and support for youth ranging in age from infancy to adolescence and to patients, families, clinical providers and staff in the their families.

Golisano Children’s Hospital.

The service provides diagnostic evaluations, individual, group and family therapies as well as medication Additionally, the division’s Crisis Intervention Service consultation and management.The service expects to provides scheduled appointments for youth of all ages and provide nearly 40,000 appointments in the next calendar their families. Children may be referred by the Pediatric year; 20 years ago, the service provided about 12,000 visits Emergency Department, the Mobile Crisis Team, and community annually. pediatricians and family medicine physicians. Linda Alpert• Partial Hospital Service is for patients who require Gillis, Ph.D., Director of Pediatric Behavioral Health & Wellness intensive services, but are able to stay at home with their Outpatient Services is excited to be able to expand this families safely without 24/7 nursing observation. Patients important resource for our community. ages 12 to 18 attend this service five days a week from “Thanks to this generous donation we will have the space 7:45 a.m. to 2 p.m., with an average length of stay for to provide needed services for youth who cannot wait for three weeks. a traditional outpatient appointment yet do not need the The program combines a variety of therapies, including resources of the pediatric or psychiatry emergency department,” one-on-one sessions, group therapy, activity therapy, and she said. “The new building will enable the innovative schoolwork, and is housed in the Psychiatry building of the outpatient crisis services to double in their capacity.”

University of Rochester Medical Center (URMC). While it Scharf and Alpert-Gillis are also looking forward to creating currently has capacity for 22 patients, it will expand by 50 new services for their current outpatients when in crisis. With percent once it is moved to the new Golisano Behavioral the new building, that will finally be possible, as an Intensive Health & Wellness building.

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

Opposite page: Michael Scharf, M.D.; Above: Rendering of the Golisano Pediatric Behavioral Health & Wellness building

Outpatient Service Line would allow such youth to receive a higher level of care than traditional ambulatory services during after school hours to enable them to stay at home and attend their regular school.

TY OF ROCHESTER MEDICAL CENTER

Other efforts

When it comes to preventive behavioral health care, the division has been an innovator in training providers and staff who work with children in a variety of settings. This has been a particular area of emphasis, especially as a means of reducing wait lists for certain programs; if children and adolescents seek and receive help before they reach crisis, their care may not need to be so acute.

One shining example is the FairStart program in the Fairport Central School District. Fairport is one of four districts that contracts with the division for mental health programs, and URMC providers use a three-tiered system to support the district own capacity to manage the behavioral health needs of their students.

First, they provide social and emotional training to teachers and nurses to ensure they can maximize their own effectiveness when they are dealing with a student who may have a mental health concern. The second tier comes from case-specific consultation and student support workshops. Then, finally, if a child reaches the point where more intervention is needed, they provide school-based services to help them to develop ways to cope with their symptoms or situation.

“The focus of our program is building a school’s capacity to address kids’ complex social and emotional needs, and that really takes a village,” said Melissa Heatly, Ph.D., the program director. “You really need to do more than just offer clinical services in a school. You need to back it up by offering additional support and training for the other adults working within that setting.”

In addition to schools, the division is also partnering with primary care providers across the region to provide similar supports — education and training for front line providers and staff, and consultation and linkage to appointments when necessary. One program, called Project TEACH, is a state wide endeavor which the Division is a regional provider for, and has been the largest provider of Continuing Medical Education credits for pediatric mental health for primary care providers in the entire country. The outpatient service is also providing integrated collaborative care to families in GCH’s primary care pediatric practice at URMC and in the community at Panorama Pediatric Group.

The various prevention efforts have helped stem the tide somewhat. But as mental health providers throughout the region continue to grapple with increasing demand for services, there’s much work to be done.

“There’s no competition until there are no wait lists,” said Scharf. “And right now, we still have them for some services.

That’s why we are so looking forward to expanding into our new building — it’s going to help a lot of children and families get the support they need.”

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‘A Space that Offers Comfort’ Ronald McDonald House opens first-of-its-kind lounge in Pediatric Mental Health Ronald McDonald House Charities of Rochester in November opened a new area dedicated to supporting the families with children receiving mental health services through Golisano Children’s Hospital. The Mental Health & Wellness Family Lounge, located at the University of Rochester Medical Center, is the very first of its kind within the entire Ronald McDonald House organization across the United States.

“We are thrilled to be the leader in bringing our family-centered care model to pediatric mental health services at URMC. This is a well-documented, unmet need in our community, and we are dedicated to supporting all families regardless of why, or where, they receive their care,” said Kelly McCormick-Sullivan, President & CEO of Ronald McDonald House Charities of Rochester. “The Mental Health and Wellness Lounge is an important extension of our long-time partnership with URMC, and we view this as a first step in a long-term commitment to pediatric mental health.”

The lounge will offer families a place to rest and relax while 11

enjoying complimentary coffee, cold beverages and healthy snacks.

The lounge will also feature a play area and laundry facilities for families. The hours of operation are from 9 a.m to 5 p.m. Monday through Friday. In addition, the lounge will be staffed with members from the RMHCR team, who bring kindness, compassion and empathy to the overall family experience.

“Families who use our services are already going through something challenging,” said Michael Scharf, M.D., Chief of Child and Adolescent Psychiatry in the URMC Department of Psychiatry.

“With this new lounge, they will have a space that offers comfort — both physical and emotional — allowing them to focus all of their energy and attention on their child’s treatment.”

The URMC Department of Psychiatry’s Advisory Council of Consumers (DPACC) — made up of patient and family members who advocated for this space — the Office of Mental Health Promotion, and the Friends of Strong, also supported this project.

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

Dr. Maura Tappen liked Rochester so much during medical school that she decided to stay here for her residency in psychiatry.

Three years later, she was faced with the choice of where to go for her fellowship program. She could have gone to Boston, or Baltimore, or moved closer to her hometown in New Jersey.

But again, she chose to stay in Rochester.

“There is such a community focus here — everybody helps each other,” said Tappen. “That’s why I didn’t want to leave.”

Tappen is now in her first year of the University of Rochester Medical Center’s child and adolescent psychiatry fellowship program, which takes physicians who have already completed a residency in psychiatry and trains them specifically in pediatric behavioral health.

She was first drawn to the field during medical school, when she found that the patients who stuck with her the most were those who benefited from a psychosocial approach to care. Then, during her residency, she was able to work with children — and she knew she had found the perfect fit.

“It was just like everything clicked,” she said.

As part of the two-year program, Tappen is receiving a wealth of experience in both inpatient and outpatient settings. She also spends time working in the community — providing care as a member of the mobile crisis team, shadowing at court, and working at schools and partner organizations, such as the Villa of Hope.

“I love being able to help a child get better and be able to go home from the hospital, or building a rapport with a child who I’m providing care to in the office,” said Tappen.

“Working with children is challenging, but it’s also extremely rewarding.”

Tappen isn’t sure which area of pediatric behavioral health she’d like to focus on, but she does know where she wants to practice: Rochester. She’s not alone — 45 percent of fellows at URMC stay on as faculty after they complete their training, and fellowships are the most reliable pipeline of future faculty.

“It’s an exciting time to be working in Rochester in this field, because our community is really galvanizing around the mental health needs of children,” said Tappen.

You can help support our fellowship programs, which train the next generation of physicians. To make a donation or for more information, call our advancement team at 585-273-5948.

“There is such a community focus here — everybody helps each other... that’s why I didn’t want to leave.”

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to benefit Golisano Children’s Hospital

More than $251,000 was raised during this year’s Cares for Kids Radiothon!

Special thanks to all of our sponsors, families and volunteers and the incredible support of iHeartMedia and 13WHAM, including Jennifer Johnson, JP Hastings, Julie Dunn, Mayor Pete Kennedy, Scott Brooks, Pat McMahon, Bob Lonsberry, Deanna King, and Pauly Guglielmo.

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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 Miracle Moment Sponsors Advantage Federal Credit Union, Pettis Pools, Garber Automotive

Phone Bank Volunteers Tops Friendly Markets, Walmart, GCH Board and Faculty, Pediatric Nursing, UR Medicine’s Imaging Department, Frontier Abstract, Dr. Drabik’s Office, the Rochester Amerks, and Consiliarium Group

Special Thanks Dunkin Donuts and Champps Restaurant

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Endowment spotlight: Don and Leslie Tomeny

Two young children, both with medical issues, lived in a home that wasn’t particularly modern. They both needed feeding tubes, but every time both of their support machines were turned on at the same time, the fuse would blow.

So a few Christmases ago, an electrician came to their house and rewired everything, making sure they’d have the ability to use both.

Each Christmas, B&L Wholesale and CEO Don Tomeny have supported families like this one by making gifts through Golisano Children’s Hospital’s division of Pediatric Social Work. It’s become a tradition — something extra the company does, in addition to their annual golf tournament which has now raised more than $2M total for the children’s hospital.

And this past Christmas, on a personal level, Tomeny and his wife, Leslie, and their 3 children and their spouses — Erin and Alan Deuel, Brian and Laura Tomeny, Matt and Kristy Tomeny — decided to do even more, giving $1.25 million to the hospital — $1 million of which will support the Tomeny Family Pediatric Social Work Fund in the form of an endowment.

“This level of giving is just unprecedented for our team,” said Carla LeVant, Senior Social Worker. “We can’t express how appreciative we are of Don and Leslie, and just how much this gift is going to mean to our patients and families.”

The Pediatric Social Work Fund is where children’s hospital social workers turn when a family needs a small amount of monetary help: A parking pass for a parent who is having trouble affording daily visits. A gas card for someone driving regularly from outside the region. Some formula for a NICU mom going home who can’t afford it right now. A sandwich for a Mom waiting for her 4-year-old to complete a 6-hour chemo treatment.

“I don’t think there’s a better value — to buy something that costs so little and yet means so much to a family,” said Tomeny. “It is almost the perfect way to help parents of very sick kids, in the most

stressful times of their lives, with simple things that matter more than most of us could even imagine. As important, it will also support the dedicated social workers who have frequently taken up collections between themselves to provide these needed items for these families when there are no other options.”

As to why they chose an endowment, rather than a single gift, Tomeny said that the gift’s permanence — it is likely to generate close to $50,000 annually, in perpetuity — made it appealing to his family.

“When we’re gone, it doesn’t stop.

When our kids are gone, it doesn’t stop,” said Tomeny. “And our grandchildren and great-grandchildren will see what we’ve done, and hopefully they’ll learn from it.”

Flanked by their children, Don and Leslie Tomeny presented the gift at a surprise ceremony in December. Afterwards, the social workers who had assembled all introduced themselves, each sharing a time that the Pediatric Social Work Fund had allowed them to help a family in need.

“Everyone was in tears,” said LeVant.

“And having the whole Tomeny family there was emotional for us, because they really appreciate the breadth of what we do.”

Walmart and Sam’s Club Celebrate Fundraising Milestone Walmart and Sam’s Club’s associates have now raised a total of $1 billion for Children’s Miracle Network Hospitals.

The national campaign, started in 1987, has helped provide lifesaving equipment, therapy programs, and state-of-the-art facilities at 170 hospitals throughout North America, including Golisano Children’s Hospital.

The cumulative $1 billion is the largest amount ever raised for a nonprofit by one company in North America, according to Engage for Good, a trade group that tracks fundraising campaigns.

“The $1 billion raised by Walmart and Sam’s Club customers, members and associates has changed the world of children’s healthcare,” said John Lauck, president and CEO, Children’s Miracle Network Hospitals. “Because of their generosity, tens of millions of kids across 15

the U.S. and Canada are living better.”

Rochester-area stores are celebrating their own fundraising achievement: They recently hit their $1.5 million goal to name the lobby of the new Golisano Children’s Hospital. In total, local stores have raised more than $4.1 million to support the region’s sick and injured children since they joined the national campaign nearly three decades ago.

“We are proud to support the work that is done at the children’s hospital, because we know how lucky we are as a community to have a world-class facility in our backyard,” said Timothy Bernard, market manager for Walmart. “Many of our associates have been impacted by the hospital in one way or another, and their experiences — which are always positive — help motivate our team to make a difference, one donation at a time.”

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Every spring, local stores turn their six-week campaign into a fundraising competition, battling it out for the No. 1 spot. Associates come up with new and creative ideas, and managers often have to sit in a dunk tank or kiss a pig if the stores meet their goal.

“The local associates put so much enthusiasm behind this campaign every year, and it is always so amazing to see,” said Betsy Findlay, director of advancement at Golisano Children’s Hospital. “Our Walmart and Sam’s Club stores have been the hospital’s biggest fundraising group over the years, and we couldn’t be more grateful for their hard work and support.”

Bills Legend Jim Kelly on Hand for Leukodystrophy Designation

Golisano Children’s Hospital has been designated an official Leukodystrophy Care Network Center by the Hunter’s Hope Foundation.

Hunter’s Hope Foundation cofounders Jim and Jill Kelly announced the designation in November, making Rochester just the seventh Leukodystrophy Care Network Center in the nation and the first in New York State.

Led by Robert Thompson-Stone, M.D.,

assistant professor of Pediatrics and Child Neurology, the UR LCC will work across disciplines to provide the best care to patients and families.

Thompson-Stone and others will also participate in regular meetings with fellow Leukodystrophy Care Network clinicians throughout the United States, allowing providers to share best care practices and discuss new and ongoing research into leukodystrophies.

One in 7,000 children are born with a leukodystrophy, a group of rare, progressive genetic diseases that affect the brain and spinal cord. Jim and Jill Kelly’s son, Hunter, was diagnosed in 1997.

“Jill and I were told to go home, make

Hunter comfortable and that he wouldn’t live to see his second birthday. Hunter lived to be eight and a half years-old,” shared Jim Kelly, Hunter’s Hope Co-Founder and Pro Football Hall of Fame Member. “We believe he lived so much longer than expected because of the good Lord, and because we treated Hunter as though he was living, not dying. Twenty-one years later, families are being told the same thing that Jill and I were, and that has to change.”

The Hunter’s Hope Foundation established the Leukodystrophy Care Network in 2015 with the goal of improving the health and quality of life of individuals affected by leukodystrophies.

Through the designation, the foundation will support a patient care coordinator in Rochester who will help families navigate their treatment.

JAR WARS fundraiser shows that a little change can go a long way Joshua and Teagan Ytreberg headed to school on a brisk weekday in October, their backpacks filled with empty jars. They would set them out in each classroom and ask for donations to Golisano Children’s Hospital, all in honor of the older brother they’d never gotten to meet.

The classroom at Holy Cross Elementary that raised the most money would get a pizza party. With that incentive, they hoped that, over the course of the 10-day “Jar Wars” campaign, they could raise, maybe, $300.

“But we ended up having two classrooms raise more than that on their own,” said Jonathan Ytreberg, Joshua and Teagan’s father. “Teachers were asking us for extra jars. It was incredible.”

In the end, the family-led effort had raised $1,643.17. That’s 17,312 pennies, 2,656 nickels, 3,851 dimes, 2,851 quarters, and 252 dollars. The school’s efforts were so extraordinary that the Ytrebergs ended up sponsoring two pizza parties for the top two classrooms (and a cookie party for third place).

“The kids were asking questions about the hospital, and about our family’s experience, and I think it’s good that they could understand that, sometimes, people

do have to go through things like this,” said Jonathan.

For Jonathan and his wife, Denise, the first encounter with Golisano Children’s Hospital came in October 2007. Their first child, Jackson Ytreberg, was born early, at just 29 weeks old. He lived for 31 days, all of which were spent in the Neonatal Intensive Care Unit, before passing away.

Their second son, Joshua, was born two years later, followed by a daughter, Teagan, in 2011. But when their third son, Tristan, came along in 2017, it was back to the NICU; Tristan arrived at 30 weeks at only a couple ounces larger than Jackson.

Fortunately for the Ytreberg family, a decade had made quite a difference in their hospital surroundings.

“To see the difference, 10 years apart, and see what the NICU has become, and

the new tower, and everything they can do for parents and patients, it’s just amazing,” said Jonathan.

Soon after Tristan came home, Joshua started working on a PowerPoint presentation for the Jar Wars fundraiser. He and Teagan went in to their principal and asked if they could host it at Holy Cross.

The answer was a resounding “yes,” and after the success of the first year, they’re hoping it can become an annual event.

“The kids were just as amazed as we were,” said Jonathan. “Now we’re just talking about ways to make it better.”

STRONG KIDS NEWS | 2019 VOLUME 1

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Thank you!

A Charlie Brown Christmas at Nazareth College Awareness Coffee B&L Golf Tournament Be Happy Yoga Event at Viaggio Crosby’s Fund Crusin for a Cause Durand Eastman School’s Lemonade Stand Fairport Music Festival Holy Cross Star Wars Jar Wars Jody B’s Studio of Dance Holiday Fair Kittelberger Golf Tournament Ladies Auxiliary of Kendall Lauren’s Legacy MacKenzie Burke Maia’s Cards Mila’s Wings Music for Mom Northside / Dudley Fall Crawl

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The 2018 Panda Challenge Penfield Cross Country 24 hour Marathon Purple Games Give Cancer a Kick to the Grass – Greece Athena Rainbow Classic – Pittsford Mendon vs.

Pittsford Sutherland Roc City Roller Derby Roc Prom Rerun Sips and Flips for Hips Skills USA Color for a Cause Spirit Halloween/Spirit of Children Stiles Spooktacular 5K Event Team Ali-Gaiters The Cub Room Whiskey Brunch Ugly Disco Visions Dance Studio Concert WNY Optics Golf Tournament Young at Heart Senior Club

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

Upcoming Community Events

Golisano Children’s Hospital Advancement Office

585.273.5948 | www.givetokids.urmc.edu

March 30, Ugly Disco Riverside Convention Center Come get your groove on from 8 p.m.-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.

March 31, SMILE Carnival Lunch Nazareth College

Come eat pizza and enjoy carnival games and prizes from 12-3 p.m. to benefit the Cleft and Craniofacial Anomalies Center at Golisano Children’s Hospital.

For more information contact mtobin9@naz.edu.

June 1, Stroll for Strong Kids and 5K Genesee Valley Park, 1000 East River Road

Scott Rasmussen Sr. Assistant Vice President for Advancement 585.273.5932 Betsy Findlay Sr. Director of Advancement, Special Events and Children’s Miracle Network 585.273.5933 Jessica Stadt Associate Director of Advancement 585.275.1803

The event, which lasts until 1 p.m. features family-friendly activities including more than 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.

Meghan Barnhardt Associate Director of Community Affairs 585.275.2268

June 8, Team Ali Gaiters 16th Annual Clambake Event Honeoye Falls Fireman’s Training Grounds, 321 Monroe Street

Linda Shillabeer Advancement Assistant 585.276.3568

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. Event lasts from from 2-7 p.m. Tickets are available in advance and at the door. For more details please contact Jackie Klube at 585-704-4124.

Save the Date 2019 August 26 – Golisano Children’s Hospital Golf Classic October 19 – Golisano Children’s Hospital Gala

Katie Keating Office Assistant 585.273.5931 Jennifer Paolucci Program Manager, Special Events and Children’s Miracle Network 585.273.5936

URMC Communications Sean Dobbin Senior Public Relations Associate 585.273.2840 Jessica O’Leary Public Relations Associate 585.276.4298

Dr. Christopher Cook Chief of Pediatric Orthopaedics

Dr. Julie Riccio Chief of Pediatrics at Highland Hospital

Heather Deal Graphic Designer 585.275.7779

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

Dr. Clinton Morrison Operation Director of GCH Surgical Services

Dr. George Porter Interim Chief, Division of Pediatric Cardiology STRONG KIDS NEWS | 2019 VOLUME 1

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

SAVE THE DATE ∙ 23RD ANNUAL UR MEDICINE GOLISANO CHILDREN’S HOSPITAL

STROLL FOR STRONG KIDS & 5K RUN SATURDAY, JUNE 1, 2019 ∙ GENESEE VALLEY PARK

givetokids.urmc.edu URMC-19_GCH_Stroll_STD_F.indd 1

Presenting Sponsor

1/31/19 12:18 PM