UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS
2018 VOL. IV
Spotlight on:
Division Expands Rapidly Amidst Growing Demand
Pediatric Allergy/Immunology
Esophagitis Clinic Offers Array of Treatments
Immunology Docs Looking for ‘Zebras’
Hospital Ranked Among Nation’s Best
UR Medicine’s Golisano Children’s Hospital has been named to two national lists celebrating the country’s children’s hospitals. Parents magazine placed our children’s hospital on its list of the 20 Most Innovative Children’s Hospitals in the country, which was published in September. One month later, the Women’s Choice Awards named Golisano Children’s Hospital as one of the country’s 42 Best Children’s Hospitals. Parents identified top hospitals based on an extensive survey about hospital innovations in patient care, research, and partnerships. Golisano Children’s Hospital was highlighted for having the first Integrated PET-MRI imaging device in a children’s hospital and for our telemedicine program which helps bring specialized asthma care to students in the Rochester City School District. The Women’s Choice Awards also based their awards on an indepth survey which looked at pediatric services, technology and family resources, board certified staff, nurses and support staff, and the facility’s commitment to quality. “It’s always wonderful to be recognized as one of the best, because it validates what everyone in this building already knows to be true,” said Tim Stevens, M.D., Chief Clinical Officer for Golisano Children’s Hospital. “We’re thrilled to appear on both of these lists and will continue to work hard to ensure that children in our region get the best quality of care.”
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
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 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
URMC to Host National Developmental Disabilities Health Conference The University of Rochester Medical Center (URMC) will host the 2019 annual conference of the American Academy of Developmental Medicine and Dentistry (AADMD). The event, the preeminent conference for physicians, dentists, and other providers who treat patients with intellectual and developmental disabilities, will take place from May 10-12 at the Hyatt Regency Rochester. The conference, in its 17th year, typically draws about 400 people. Annual medical conferences often center on the latest research in the field, but AADMD has always focused on being a resource for health care provider training and education, said Stephen Sulkes, M.D., president of AADMD and professor of Pediatrics at URMC.
“Most of our members are clinicians, and so the annual conference is really about disseminating information on what is working clinically,” said Sulkes. “It’s really about education and showing how to help practitioners get more comfortable working with patients with disabilities.” Sulkes, who last year was honored with the first-ever Golisano Global Health Leadership Award, served as president-elect for AADMD for the past two years and took over as president last month. In addition to its educational mission, the organization works with several other national partners — including Special Olympics and The Golisano Foundation — to advocate for the best health across the lifespan for people with disabilities. So in his role as president, Sulkes has started work advancing various advocacy efforts. Recently, he met with the United States Surgeon General, Jerome Adams, in the hopes of bringing more attention to the topic of health disparities for those with intellectual and developmental disabilities. “It’s well-documented that people with
intellectual and developmental disabilities have some significant disparities in terms of their health,” he said. “And while a portion of it can be explained by co-morbidities that occur along with their disability, a very large part is inequities within the system — such as having to travel long distances to find a provider who is comfortable treating them, if they can find one at all.” URMC is home to the Strong Center for Developmental Disabilities, one of 67 University Centers for Excellence in Developmental Disabilities. The center advances policy and practice for individuals with developmental and other disabilities, their families, and communities through research, education, and service. AADMD, founded in 2002, provides a forum for healthcare professionals who provide clinical care for people with intellectual and developmental disabilities. For more information on AADMD, visit aadmd.org.
Golfers Chip In to Support Sick and Injured Kids More than 350 golfers hit the links in August to raise funds for Golisano Children’s Hospital as part of the 22nd annual Golf Classic. Held at Monroe Country Club, Oak Hill Country Club, and the County Club of Rochester, the event draws participants from across the region or a day of golf, dinner, and socializing. This year, the event raised more than $320,000! Thank you to our major sponsors: • Vizient, Inc. • EPIC Systems • Tremco Roofing, Co. • Accurate Acoustical, Inc. • Spall Management Corp.
Save the date for next year: August 26th, 2019!
STRONG KIDS NEWS | 2018 VOLUME 4
2
Mark and Maureen Davitt hope their recent philanthropy will ‘enrich the community’
Once every so often — usually in March, when her patience with the cold weather has reached its end — Maureen Davitt daydreams about moving away from Rochester. Sometimes, she even goes so far as to imagine where she and her husband, Mark, might land should they ever decide to leave town. “I start thinking, ‘What would be important to me if I were picking out a new place to live?’ And number one on the list would be access to good health care,” she said. “Because if you don’t have your health, what do you have?” Over the years, the Davitts made a handful of gifts to the University of Rochester Medical Center. ConServe, an accounts receivable management company that Mark Davitt founded in 1985 and where he continues to serve as CEO, was steadily expanding, and the Davitts found occasion to support various health
3
programs at URMC and elsewhere. But recently, the Davitts decided to raise the stakes, returning to URMC with their biggest gift yet: a $2 million donation to support Golisano Children’s Hospital and its programs. In October, they joined hospital leaders in a ceremony which named the hospital’s 8th floor in their honor. “Remarkable generosity,” said Mark Taubman, M.D., CEO of URMC and Dean of the School of Medicine and Dentistry. “We are truly humbled. This gift will impact children’s health for generations to come.” Initially, the Davitts were hoping to keep their donation quiet, but when told that sharing the news could potentially inspire others to join them in giving, they decided that a little publicity was worthwhile. Earlier this year, they also announced significant gifts to the Seneca Park Zoo and Rochester Institute of Technology in the hopes of generating additional philanthropy.
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
“We want to do our part to enrich this community,” said Mark Davitt. “This is where we live. We raised our family here, sent our kids to school here, and worked here. Now, we want to give back.” At Golisano Children’s Hospital, large gifts can have a cascade effect that goes well beyond the dollar value of the donation. For example, hospital leaders say that the new Golisano Children’s Hospital building — which opened in 2015 and is still being paid for by new gifts, such as the Davitts’ — has served as one of their best recruitment tools. The best doctors want to have the best facilities possible at their disposal, and URMC now boasts one of the newest, most technically advanced children’s hospitals in the country, a significant distinction for many physicians who are considering multiple offers. In fact, Golisano Children’s Hospital’s new Physician-in-Chief, Patrick
means the people on both ends of the lifespan: children and those late in life who need hospice care,” said Mark Davitt. “Families shouldn’t have to move out of the area to find the best care for their loved ones.” Speaking of which, the Davitts aren’t actually Brophy, M.D., was being courted by several universities before he decided on Rochester, planning on leaving Rochester any time soon, despite Maureen’s reservations about citing the new hospital building as one of the winter. They share the same affinity that the main reasons he was drawn here. many locals do for a certain local grocer, For the Davitts, the children’s hospital among other things. represented an opportunity to support a “Where else in the country would you group of patients that they’ve long cared say to out-of-town visitors ‘Hey, let me about. Earlier in their lives, Maureen made show you the grocery store!’” said Mark her living as a pediatric nurse, and has seen Davitt. “But it’s not just Wegmans, of firsthand the significance of being able to course. For a small town, we’ve got so find care close to home. much to offer. The Jazz Fest, the Finger “We’ve always focused on the most Lakes, restaurants that can compete with vulnerable populations, and to us that
New York and Boston, and in addition, you still have these Norman Rockwell-ian hamlets and countryside.” As he speaks, it becomes apparent that Mark Davitt has made this pitch to prospective ConServe candidates before. But he also knows that once people experience Rochester, they tend to stick around, and that continuity has helped his business grow and thrive. Now, thanks to his family’s support, Rochester’s children’s hospital will continue to grow and thrive, too.
STRONG KIDS NEWS | 2018 VOLUME 4
4
‘An area of need’ Pediatric Allergy and Immunology expanding quickly amidst growing demand
Courtney Curley lay on her bed in the Pediatric Intensive Care Unit, struggling to breathe. An otherwise healthy teenager and three-sport athlete — a forward for the Churchville-Chili High School soccer team, as well as a hurdler and high-jumper — Curley had been in the PICU for almost two weeks because she’d caught a cold. A normal, run-of-the-mill cold. But with her seasonal allergies already in high gear, the cold had triggered her asthma, which sent her to the emergency room. “It’s happened three times now,” said Courtney. “It was getting hard, especially because of all the school I was missing.” For much of her youth, Courtney’s family had tried to manage her treatment through her pediatrician. But the trips to the hospital had become a near-regular occurrence, and it was becoming obvious that she needed specialized care. She was referred to Kirsi Jarvinen-Seppo, M.D., Ph.D., Chief of Pediatric Allergy and Immunology at Golisano Children’s Hospital. After an allergy test and a look at her past treatment, JarvinenSeppo came up with a plan to try to get Courtney back on to the soccer field — and keep her far away from the hospital. Through a combination of targeted therapy and preventive allergy injections, the hope was that Courtney would be able to avoid any flare-ups. As recently as five years ago, Courtney’s treatment may
5
have looked a bit different. While Golisano Children’s Hospital specialists have always offered treatment to youths with allergies, the Division of Pediatric Allergy and Immunology didn’t exist. Jarvinen-Seppo was hired in 2014 to start the division, and in just a few short years, she’s added four other physicians to the roster. “It’s a specialty that is growing all over the country, in part due to the increase we’ve seen in food allergy, but also because various environmental allergies appear to be on the rise as well,” said Jarvinen-Seppo. “Rochester is no different — it was clearly an area of need.”
A return to roots
The division’s creation was a return to Rochester’s roots in pediatric allergy, as the university served as one of the country’s leading centers in the field for the better part of the 20th Century. Dr. Jerome Glaser, a Professor of Pediatrics at the University of Rochester Medical Center, created what were among the first
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
pediatric allergy clinics in the country, launching them at Strong Memorial Hospital and Genesee Hospital in 1930. In 1946, Glaser was one of the first physicians certified for specialized allergy care by the American Board of Pediatrics (his certificate read “No. 5”), and a decade later, he published one of the seminal books on the subject, titled Allergy in Childhood. One of Glaser’s trainees, Dr. Douglas Johnstone, succeeded him as the Director of Pediatric Allergy at Strong Memorial Hospital in 1955. Johnstone carried out landmark studies showing that allergy injections in children could prevent the development of new allergies and subsequent asthma. Johnstone’s work, in turn, was continued by one of his trainees, Dr. Robert Schwartz, who led the pediatric allergy program in Rochester in subsequent years while also serving as Chair of the American Board of Allergy and Immunology, as well as editor of the journal Pediatric Asthma, Allergy and Immunology. But the program stalled in the mid-80s, and wasn’t revitalized until Dr. Eric Dreyfuss, Professor Emeritus of Pediatrics, approached the then-Chair of Pediatrics, Dr. Nina Schor, about restoring it. Dreyfuss ultimately made a large gift to support an endowed Chair for the Chief of the soon-to-be-recreated division, which would help the university attract candidates. Soon after, Jarvinen-Seppo became the first to hold the reconstituted position.
Comprehensive care
Now, just four short years later, the division provides comprehensive evaluation and management for conditions including hay fever, hives, recurring infections, food allergies, eosinophilic gastrointestinal disorders, drug allergy, anaphylaxis, dermatitis, and eczema. Specialized clinics have formed, including one for esophagitis — run by Dr. Jeanne Lomas, who came through fellowship at URMC and started on faculty in 2015 — and one for immunology disorders, led by Dr. Maria Slack, who also joined faculty in 2015. Two other clinicians, Dr. Jessica Stern and Dr. Puja Sood Rajani, have also come aboard in the last two years, and the division also supports two researchers, Dr. Antti Seppo and Dr. Bridget Young. As for Courtney, her treatments now consist of a bi-weekly dose of omalizumab. She’s also getting allergy shots to help manage her seasonal allergies. And she hasn’t been back to the hospital — or even had reason to use her inhaler — in months. “It’s been nothing short of life-changing,” said Chris Curley, Courtney’s father. “We can’t say enough about what this care has done for her.”
STRONG KIDS NEWS | 2018 VOLUME 4
6
Treating Esophagitis Specialized clinic focuses on condition that often accompanies food allergies
Two-year-old Logan Mosher zooms the firetruck along the track, pushing its buttons to make its sirens wail. A minute passes, and then, he’s on to the tow truck. Next, he circles around the table to grab the helicopter, flying it above his head. Too busy to look up and smile for the camera, he’s playing like any normal toddler. But just over a year ago, Logan was too sick for this kind of busy, active playtime — and his mom, Jody, had no idea what was wrong. “He wasn’t running around, and he probably would have preferred to just play on the floor,” said Jody, a pediatric nurse. “His skin had begun to look so pale.” When Logan first started to get sick, Jody and her husband, Brad, thought it was the stomach bug. He had all the classic, yucky symptoms, and the illness had been making the rounds at day care. But weeks went by, and while everyone else recovered, Logan didn’t. Months passed. At his 18-month checkup, he hadn’t gained any weight since his 1st birthday. “It was so difficult seeing him like that,” said Jody. “He had been such a big, happy baby, and he made a complete turn, within months.” After Logan made a visit to his pediatrician, Jody took him to see Jeanne Lomas, D.O., an allergist at the University of
7
Rochester Medical Center. As soon as Lomas heard about Logan’s symptoms, she had a feeling she knew what was wrong. She suspected Logan had eosinophilic esophagitis (EoE), a chronic inflammatory disease of the esophagus that’s often associated with allergies. The condition can cause many of the symptoms Logan was experiencing, including poor growth, difficulty swallowing, choking, nausea, and vomiting. Despite having no family history of food allergies, tests revealed that Logan was allergic to a long list of foods: wheat, dairy, soy, eggs, and turkey. To confirm that Logan also had EoE, doctors performed an upper endoscopy — which allowed them to examine Logan’s esophagus using a tiny camera on the end of a long, flexible tube. “This condition has often been missed in the past, but we believe it’s much more common than previously thought,” said Lomas, noting that EoE was only first described in the 1990s. “Sometimes, it’s not identified until a child begins choking and shows up in our emergency room.” To better diagnose and care for children with EoE, Lomas,
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
along with Esther Prince, M.D., a pediatric gastroenterologist, and Brianne Schmidt, a dietitian, set up a clinic focused solely on EoE in 2017. As part of the clinic, children who may have the disease or who have already been diagnosed are able to see all three specialists in one visit. “The clinic provides some added convenience for parents, but it also allows the three of us to sit in a room together and work collaboratively to come up with a treatment plan,” said Prince. “We each bring something different to the table.” The team now cares for more than 100 children from across the region, and the clinic will soon increase in frequency to twice a month. Depending on each child’s unique case, they have an array of treatment options to choose from, including medications that help control inflammation as well as a simple procedure that helps stretch narrowed portions of the esophagus. Many children also benefit from eliminating triggering foods from their diet. That’s where Schmidt steps in to help families
identify substitutions and ensure children are still meeting their nutrition needs. “Eating affects so much — behavior, learning, development — and when there’s a problem, EoE is usually not the first thing you think of,” said Schmidt. “But once it’s identified, treatment can make a world of difference.” That sentiment rings true for Logan, who is a completely different kid than he was a year ago. Since his diagnosis, he’s been growing and gaining weight thanks to medication and a new diet. He has energy to play, and he’s making up for small delays in speech he was experiencing as a result of being sick. Now, he will undergo follow-up endoscopies to check on whether his treatment plan is helping, and in the coming months, he’ll be able to try reintroducing certain foods into his diet. “It’s been a process, but he is doing so well,” said Jody. “You never stop worrying when you have a child with food allergies, but knowing that there was a reason behind his symptoms, and that it was treatable, gave us so much relief. Now, we have a path forward.”
STRONG KIDS NEWS | 2018 VOLUME 4
8
Research Spotlight: Decoding Allergens With numerous studies underway and more on the horizon, the Allergy/Immunology team at the University of Rochester Medical Center (URMC) is actively seeking new ways to understand why allergies develop and create new prevention and treatment options. “Allergies are increasingly common and they can have a substantial effect on a child’s life,” said Kirsi Jarvinen-Seppo, M.D., Ph.D., Chief of Pediatric Allergy and Immunology. “Currently, allergies can hardly be cured, so the development of new prevention and treatment options is essential.” Last year, the team launched a $2.4 million, fiveyear initiative to take a closer look at how the immune system develops in infants. The study, funded by the National Institutes of Health, is comparing immune system development in Old Order Mennonite infants, who are at low risk for developing allergies, with that of Rochester infants who are considered high-risk for developing food allergies. Less than 1 to 2 percent of Old Order Mennonites have food allergies. Overall, 1 in 13 American children – about 8 percent – develop a food allergy. “Individuals in the Old Order Mennonite community live on farms, avoid antibiotics, and deliver their babies at home — and as a result, they are exposed to a variety of bacteria that those living in the city or suburbs don’t come into contact with,” said Jarvinen-Seppo. “We believe that differences in lifestyles between these two groups affects how their microbiomes and immune systems develop and as a result, impact their susceptibility to food allergies, atopic eczema, asthma, and other allergic diseases.” URMC is recruiting 80 mothers and their infants prenatally or soon after birth. Researchers are enrolling infants who are born to families with a parent or older sibling with allergic diseases — especially those with food allergies — who reside in the Greater Rochester area for two years. The study is also enrolling 80 mother-infant pairs from the Old Order Mennonite community in and around Penn Yan.
9
The team is also involved in two other promising initiatives: • URMC is serving as the coordinating center for a multi-site project supported by a $1.5 million grant from the Bill & Melinda Gates Foundation. The initiative is exploring whether breastmilk can offer infants protection from key respiratory and diarrheal illnesses. Researchers are analyzing breastmilk samples from different geographical areas of the developing and developed world to determine whether certain antibodies — which fight bacteria, viruses, and toxins — are passed from mothers to infants through breastmilk. • As part of a large, multi-site clinical trial, URMC is helping to test an immunotherapy treatment for peanut allergy. Participants receive small, but increasing amounts of peanut protein in the form of powder as a way to desensitize them to their allergy. “This will not allow subjects to eat peanuts freely, but will make exposures to small amounts of peanut, such as those that come as a result of cross contamination, less dangerous,” said Jarvinen-Seppo. “This therapy is very promising and it could make families’ lives much less stressful.” Researchers are expected to finish analyzing the results of the study within the next year, and if the product receives approval from the Food and Drug Administration, it could be a treatment option for children who have a peanut allergy.
If you are pregnant and you or a member of your family has hay fever, food allergies, asthma or eczema, you may qualify to be a participant in this study. For more information, visit: golisano.urmc. edu/InfantAllergyStudy.
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
Immunology Clinic on the Lookout for ‘Zebras’ Most doctors look for horses. Immunologists, though — they look for zebras. “It’s based on this old medical school saying, that when you hear hoof beats, you should look for horses, meaning that the most likely diagnosis should be your initial focus,” said Maria Slack, M.D., director of the pediatric immunology clinic at UR Medicine’s Golisano Children’s Hospital. “But physicians who deal with Primary Immunodeficiency Disease (PIDD) — we find those zebras a little bit more often. So we grow accustomed to looking for them.” Slack joined the Division of Pediatric Allergy/Immunology three years ago, and shortly after coming aboard, she partnered with Geoffrey Weinberg, M.D., Clinical Director of Pediatric Infectious Disease, and began seeing patients at the hospital’s pediatric immunology clinic. The clinic treats children who are suffering from recurrent or unusual infections. Often, the cause turns out to be something environmental, with allergies being a common culprit. But sometimes, the doctors find a zebra — a condition that has
compromised the patient’s immune responses on a systemic level. These conditions, wide-ranging in both type and effect, are often referred to under the blanket diagnosis PIDD. “Some of these conditions are curable, and many are treatable,” said Slack. “The key step is just identifying what they are.” When 12-year-old Benjamin Brouillard arrived in Slack’s office, nearly a decade had passed since he’d been diagnosed with oral thrush, a painful infection that causes legions on the inside of the mouth and throat. Normally treatable with an antifungal medication, Benjamin’s thrush kept coming back, over and over. “We were tearing our hair out for years just trying to understand what was going on,” said Karen Brouillard, Benjamin’s mother. Slack, alongside Dr. Rebecca Abell, pediatric gastroenterologist, and Angela Girvin, M.D., pediatric hematologist/oncologist, began studying Benjamin’s medical history — and that of his family. After ruling out a few possible causes, they moved on to blood work and imaging while continuing a sustained antifungal regimen. After several months, they decided to try genetic testing. Results took some time to come back, but finally, the Brouillards had an answer: Benjamin had a gene mutation called STAT1 gain-offunction. What’s more: his identical twin brother, Jonathan, had it too, despite never sharing his medical challenges. Now, the brothers are both receiving treatment, and they’ve connected with researchers who are studying the mutation and attempting to find cures. “It’s been a long journey and it isn’t over,” said Karen Brouillard. “But we couldn’t be more thankful for the expertise of Dr. Slack. Having confidence, and knowing your docs are so knowledgeable and so compassionate just makes a world of difference.”
Fellowship Spotlight: Dr. Jennifer Pier
Jennifer Pier, M.D., is where she is now because of a stuffy nose. Pier was a pediatrics resident completing her rotation in the Allergy/Immunology department last year when a patient came in with severe congestion. “It was completely affecting his quality of life,” she said. “It was hard for him to breathe, hard for him to concentrate.” Pier prescribed a nasal spray, and by the child’s follow-up visit, he had made a complete turnaround. He was back to
playing sports and was paying better attention in school. “It was amazing to see what kind of effect we could have, even with a simple treatment,” said Pier. Pier was hooked — she knew right then and there that a career in the field was the right path for her. After completing her pediatrics residency in June, Pier began a two-year fellowship in Allergy/Immunology at the University of Rochester Medical Center (URMC). The program equips doctors with the knowledge and skills they need to provide specialized care in the field. During her two years of training, Pier will work alongside the department’s physicians, learning from them and gaining more autonomy as she progresses through the program. In addition to clinical service, the fellowship program also includes a
dedicated, nine-month research track. Pier plans to use the time to advance research on Food Protein-Entercolitis Syndrome (FPIES), a type of food allergy that affects the gastrointestinal tract. “Many kids with FPIES have severe vomiting and diarrhea, and it’s often not recognized as a food allergy at first,” said Pier. “It’s one aspect of our field that is really up and coming.” Once her training is complete, Pier hopes to practice in Rochester. Fellowship programs are the most reliable pipeline of future faculty, and at URMC, 45 percent of fellows go on to become faculty after they complete their training. “I’m a Western New York native, through and through,” said Pier. “I really like the idea of practicing where I grew up and helping the people who raised me.”
STRONG KIDS NEWS | 2018 VOLUME 4
10
Michael Goonan, Chair of Golisano Children’s Hospital Board of Directors, and Jenni Ralph, Event Chair for the Gala.
From left: Vinnie Esposito, Bradley Berk, Kim McCluski, Judy Goonan, Jennifer Johnson.
Honorary event chairs Michael Schwabl and Lauren Dixon, with 2008 Miracle Kid Mason Mitchell and his sister, Maya.
More than 1,000 people celebrated “Under the Big Top” at the Golisano Children’s Hospital 31st Annual Gala on Oct. 20. The event, the hospital’s largest annual fundraiser, raised an astounding $800,000 for the children and families. Honorary chairs Lauren Dixon and Michael Schwabl welcomed guests to the Rochester Riverside Convention Center, which was transformed into a giant circus tent for the evening. Jenni Ralph and her team from Wisteria Flowers and Gifts helped with decorations, and entertainment was provided by the band Sixwire, from the TV show “Nashville,” along with Don Barnes, lead singer of 38 Special; Felix Cavalier, lead singer of the Rascals; and local talent Austin Giorgio, 2018 contestant on “The Voice.”
11
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
LJ Shipley, Jeff Kaczorowski, and Michael Goonan.
2018 Miracle Kid Iris Helfner and her family.
Tom Golisano and Martin Mucci.
Special thanks to The Cabot Group, which has been the Gala’s presenting sponsor since 2008, and all of our other wonderful major sponsors for their support. Presenting Sponsor: The Cabot Group Diamond Sponsors: Dixon Schwabl Advertising, Tops Friendly Markets Platinum Plus Sponsors: Hammer Packaging, Rainaldi Brothers, Inc., William & Mildred Levine Foundation Platinum Sponsors: 13WHAM TV, Drs. David & Kate Ackerman, DGA Builders LLC, EPIC Systems, Gelb/Wolk Family, Dick & Marcia Kaplan, LeChase Construction Services, The Pike Company, URMC Department of Orthopaedics & Rehabilitation, Vision Automotive Group
STRONG KIDS NEWS | 2018 VOLUME 4
12
13
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
STRONG KIDS NEWS | 2018 VOLUME 4
14
New York RX Card
Hyundai Hope on Wheels
New York RX Card made a donation of $4,335 to Golisano Children’s Hospital. The New York RX Card is a free statewide discount prescription assistance program. The program was launched to help uninsured and underinsured residents afford their prescriptions. A donation will be made to Golisano Children’s Hospital each time a prescription is processed in the Rochester area using the RX Card. For more information and to receive the free card, visit newyorkrxcard.com.
Hyundai Hope on Wheels donated $100,000 to support pediatric cancer research and training at an event in August. During the event, pediatric cancer patients and survivors were able to take part in the program’s signature handprint ceremony. They dipped their hands in paint and placed their handprints on a white Hyundai “Hope Vehicle” which represents their collective journeys, hopes, and dreams. The organization has now donated a total of $800,000 to Golisano Children’s Hospital.
Eddie Meath All-Stars The Eddie Meath All-Star game has chosen Golisano Children’s Hospital as the beneficiary of the proceeds of their annual football game for many years. Despite the fact that the game had to be cancelled due to extreme heat this past summer, they were still able to raise $5,000. Thank you to the Eddie Meath All Star organizers for helping the children.
Rite-Aid/Walgreens
New York RX Card
Tops Tops Friendly Markets has been a tremendous supporter of Golisano Children’s Hospital for many years. Through their in-store fundraisers to their golf tournament and sponsorship of many fundraising events, they contributed more than $100,000 in 2018. Our sincere thanks to the management and staff at Tops for their continued support of the children in our region.
Eddie Meath All-Stars
More than $31,000 was raised during the Rite-Aid/Walgreens fundraising campaign this past spring. The associates at our Rochester area stores continue to go above and beyond to support the patients at Golisano Children’s Hospital. Thank you for your generous support.
Young Artist Channels Her Talents for a Good Cause Nine-year-old Maia Bastianelli has created a beautiful set of notecards to raise funds for our children’s hospital. Maia has had a passion for art since she was a toddler, and she began creating notecards to raise funds for charitable organizations when she was 7. She hoped to channel her artistic talents and give back to others in need. Over the past two years, she has raised more than $28,000 for two other local charitable organizations. Learn more about her efforts at givetokids.urmc.edu/maia.
15
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
Tristram Smith, Pioneer in Autism Research, Dies at 57 Tristram Smith, Ph.D., whose research on behavioral interventions changed the landscape of care for children with autism spectrum disorders (ASD), died after suffering a heart attack on August 6th. He was 57. At the time of his death, Smith was serving as the HaggertyFriedman Professor in Developmental/Behavioral Pediatric Research at the University of Rochester Medical Center (URMC), where he had worked since joining faculty in 2000. His research in the late ‘80s and early ‘90s, conducted alongside the late O. Ivar Lovaas, Ph.D., showed that many children with ASD could be successfully treated with behavior-based interventions, which allowed some to catch up to their peers in school. The work helped move treatment of children with ASD away from psychotherapy — which had been used with nominal effectiveness for decades — and toward applied-behavior based models. The sea change in treatment paved the way for ASD screenings in schools and pediatricians’ offices and led to numerous additional studies on behavior-based interventions. “There’s no overestimating how Tris transformed how we understand and address the needs of children with autism,” said Angela Geiger, president and CEO of Autism Speaks. “His work continues to give new hope to families and improve outcomes and quality of life across the lifespan.” In the wake of the deluge of clinical studies that followed his early work, Smith examined the comparative effectiveness of the various emerging treatments. A prolific researcher, he published hundreds of papers on ASD, and spent his spare time pushing for policy changes that would allow effective treatments to become available to more patients. “For autism families, he was a hero,” said Alison Singer, president of the Autism Science Foundation. “His research was groundbreaking, of course, but he also pushed for increased access to autism services and lobbied for legislative changes. It’s unusual to see scientists also act as advocates, but Tris went far beyond what most clinician-researchers do.” More recently, Smith demonstrated that clinical training programs for parents and caregivers could translate to tremendous behavior gains for the child, which spawned another wave of research, along with national and international efforts to implement clinical programs. In addition to lauding his research accomplishments, colleagues remembered him as a gentle, compassionate man who shied away from the spotlight, always preferring to showcase his partners and collaborators. “Perhaps it is a bit old-fashioned to say, but he was the epitome of a dying breed — a true gentleman,” said John Foxe, Ph.D., Chair of the Department of Neuroscience at URMC. “Working shoulder-to-shoulder with him to build the University of Rochester’s clinical research program in autism and other intellectual and developmental disabilities was one of the great honors of my career.” “He could say in 30 words what would take the rest of us a lifetime,” said Susan Hyman, M.D., Chief of the Division of
“There’s no overestimating how Tris transformed how we understand and address the needs of children with autism.” Developmental and Behavioral Pediatrics at URMC. “He may have been unassuming, but when he spoke, everyone would listen. I can’t begin to tell you what a loss this is for all of us.” Over his two decades in Rochester, he also became a valued mentor to many younger physicians and scientists in the field. “Many of us who were early in our careers thought that working with him might be intimidating, but he treated everyone with such respect,” said Suzannah Iadarola, Ph.D., assistant professor of Developmental and Behavioral Pediatrics at URMC. “He honestly believed that he was learning just as much from you as you were learning from him — even though you knew that wasn’t really true. But that’s just how he made everyone feel.” Smith earned his doctorate in clinical psychology at the University of California, Los Angeles (UCLA). He worked at Washington State University, Drake University, and UCLA prior to his time in Rochester. He is survived by his wife, Jennifer Katz; children, Jonah Smith and Madeleine Katz; sisters, Lisa Smith Trollbäck and Rebecca Smith Waddell; nieces and nephews.
STRONG KIDS NEWS | 2018 VOLUME 4
16
Thank you! Tyler Hutt Memorial Golf Tournament Lauren Opladen Behavioral Health Fundraiser Volleyball Tournament in Memory of Liam Edwards Lincoln Driven to Give with Cortese Auto Chocolate Milk Mile Gray Family Concert Cooperstown Charity Bowling Night Derm Golf Tournament Sips and Flips for Hips Advanced Auto Kittleberger Golf Tournament Bill Frisbie Memorial Golf Tournament Hyundai Hope on Wheels Auction Direct Car Wash Fairport Music Festival Mila’s Wings Golf Tournament Stiles Spooktacular 5k and Fun Walk
17
UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL | GIVETOKIDS.URMC.EDU
Upcoming Community Events Nov. 1 – Dec. 30, Barnes & Noble Book Drive Participating retailers During the annual Holiday Book Drive, Barnes & Noble stores donate books to hundreds of charities across the country to provide for those in need. The Pittsford Barnes and Noble located at 3349 Monroe Ave. has chosen Golisano Children’s Hospital as their charity of choice this year. The book drive will run from November 1-December 30. You may purchase a book when checking out to donate to the Children’s Hospital or select an item off the wish list table to purchase and donate.
Dec. 21, Rainbow Classic The Palestra at the University of Rochester The heated rivalry between Pittsford Mendon and Pittsford Sutherland makes for great entertainment in support of a great cause! Every penny from admission and commemorative program sales will support the Pediatric Palliative Care Program at GCH. Tipoff for the girls’ game is at 6 p.m., followed by the boys’ game at 8 p.m. Tickets are $10. For more information, call the Pittsford Athletics Office at (585) 267-1062.
Feb. 2, Cycle for Hope Participating Fitness Centers Local fitness clubs help support the kids at Golisano Children’s Hospital and Camp Good Days and Special Times, one revoluation at a time, with this spinning event. Donations of $25 per hour are requested from 8 a.m. to 2 p.m. at participating locations. For more information, visit www.cycle4hope.org.
Feb. 14-15, Golisano Children’s Hospital Radiothon 13WHAM, 100.5 The Drive, WHAM 1180 Tune in to 13WHAM, 100.5 The Drive, and WHAM 1180 over this two day stretch and hear stories of hope and perseverance from patients, families, and staff of Golisano Children’s Hospital. Last year’s radiothon raised $266,072 for our children and families.
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 Jessica Stadt Associate Director of Advancement 585.275.1803 Meghan Barnhardt Associate Director of Community Affairs 585.275.2268 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
URMC 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
Save the Date 2019 March 30 – Ugly Disco June 1 – Stroll for Strong Kids August 26 – Golf Classic
Find us on social media: facebook.com/GolisanoChildrensHospital twitter.com/urmed_gch
October 19 – Golisano Children’s Hospital Gala instagram.com/urmed_gch
STRONG KIDS NEWS | 2018 VOLUME 4
18
University of Rochester Office of Advancement and Community Affairs 300 East River Road PO Box 278996 Rochester, NY 14627-8996
The Season of Giving Gifts of all sizes, from thousands of people throughout our community and beyond, helped build our new eight-story Golisano Children’s Hospital. Now, through fellowships and other future-looking programs, we’re working to ensure that our new building will ALWAYS be populated by the best group of doctors in the country. So in this season of giving, we ask you to consider a gift to Golisano Children’s Hospital. You will be investing in a brighter future for thousands of children and families. Golisano Children’s Hospital Office of Advancement 300 East River Road, PO Box 278996 Rochester, NY 14627 Your gift to Golisano Children’s Hospital is tax deductible; make your gift by Dec. 31 in order to claim on your 2018 taxes. If you’re a donor or potential donor and would like to speak with us directly, please feel free to call (585) 273-5948.
givetokids.urmc.edu