UR M ed ic in e’ s Go li sa no C hi ld re n’ s Ho sp it al 2016 vol .III 20 16 Fairport Music Fest is ready to rock Cleft and Craniofacial Center | Treating Duchenne | Complex Care Center opens uses team approach Muscular Dystrophy | 2016 VOLUME –3 Dear Friend s— It has been 30 years since I finished enable them to bring oxygen into my residencies in Pediatrics and Child their bloodstream. You will find out Neurology. But in that time, many about new studies aimed at enhancing childhood diseases that frequently and prolonging muscle (including required hospitalization – epilepsy, heart) function in children with diabetes, cystic fibrosis, asthma – Duchenne muscular dystrophy. You became predominantly outpatient will read about the multidisciplinary diseases. And other diseases that filled team that cares for children who are hospital beds – rheumatic heart born with craniofacial abnormalities disease, H. flu meningitis – occur only like cleft lip and cleft palate. And you rarely today. This is wonderful news. will see how our innovative new Most ill children are treated at home center for young adults with complex with their families in an environment disorders provides care that helps that is private, less threatening, and these adults with childhood-onset less disruptive to everyday life. But health conditions remain healthy and what this also means is that the small become as self-reliant as possible in fraction of ill children who need to be caring for their own health. hospitalized, many of whom would None of this would be possible have succumbed to their illness in without the steadfast support of you years past, have diseases that are more and others like you. Take, for instance, complex and more chronic than our dedicated friends from the anything we were called upon to treat Fairport Music Festival, who have 30 years ago. This issue of our been there for us so many times in the Nina F. Schor, M.D., Ph.D. newsletter illustrates that Golisano past and have now made a $750,000 Pediatrician-in-Chief, Children’s Hospital is at the forefront commitment to building and Golisano Children’s Hospital, of making the lives of children with equipping our new pediatric cardiac William H. Eilinger Chair of Pediatrics complex, chronic disorders longer, operating room. We are so very more comfortable, and more fortunate to live in a community that productive. puts the health and well-being of its In the pages that follow, you will youngest and most fragile members learn about a new way to get genes first! into the lungs of newborns that Golisano Children’s Hospital Board of Directors Honorary Members Mike Goonan, Chair* Kim McCluski* Michael Amalfi Al Chesonis Kathy Parrinello, R.N., Ph.D. Bradford C. Berk, M.D., Ph.D. Jeffery Davis Brian Pasley Joseph Carbone, D.P.M. John L. DiMarco II Angela Pichichero David F. Christa Roger B. Friedlander Dante Pennacchia Judy Columbus Jay W. Gelb Ann Pettinella Wanda B. Edgcomb John Halleran Jennifer Ralph* Harvey B. Erdle James E. Hammer Gail Riggs, Ph.D. Timothy D. Fournier Howard Jacobson Mark Siewert Heather A. Goodbody Jennifer Johnson Mike Smith* Jack Goodrich Todd Levine Steven M. Terrigino* Deborah Haen Scott Marshall James G. Vazzana Nick Juskiw Gary Mauro Alan Wood Elizabeth R. McAnarney, M.D.* Raymond Mayewski, M.D. Bruce B. Zicari II Thomas McInerny, M.D. Donald P. McNelly Jeffrey Rubenstein, M.D., M.P.H. Faculty Ex-Officio Kate Ackerman, M.D. Carol Anne DeMoulin Susan Bezek, M.S., R.N., P.N.P. - B.C. Steven I. Goldstein Mitchell Chess, M.D. Frank Interlichia* Richard E. Kreipe, M.D. Mark Kovaleski, RMH Karen Powers, M.D. Douglas W. Phillips R. Scott Rasmussen* Nina Schor, M.D., Ph.D.* Mark Taubman, M.D. * Executive Committee 1 Gala continues drive toward Phase 2 stay at the children’s hospital. They recipient for Outstanding Commitment also fulfilled a $100,000 pledge along by a Corporation, and the company has with Rochester-area Kiwanis clubs for consistently supported other children’s race Esposito was a NICU room in Grace’s name. hospital initiatives, including the annual born in September Jennifer, who serves on the children’s Golf Classic. 2011 with a congenital hospital’s Board of Directors in The event, themed “A Royal diaphragmatic hernia addition to her role as a reporter and Celebration,” features a live and silent pushing her heart out of place anchor at 13WHAM, has also joined auction, dinner and entertainment and leaving little room for her several other local media members to featuring Steve Augeri, former lead lungs to grow and form. “Amazing host the children’s hospital radiothon, singer of Journey; Wally Palmar, The GGrace” fought on for a year and a half, which annually raises several Romantics, and Terri Nunn from The enduring five surgeries and spending a hundred thousand dollars for the care Berlins. Sponsorships are available week on a heart-lung bypass machine, of children. starting at $1,000 and tickets are $200 before losing her fight in February 2013. The presenting sponsor of this year’s per person. Proceeds from the gala Long before she was born, Grace’s Gala is The Cabot Group. Company will support Phase II construction at parents, Jennifer Johnson and Vinnie owner Mike Smith has been a member Golisano Children’s Hospital. Esposito, had given back to Golisano of the children’s hospital Board of Children’s Hospital. And this year, they Directors for six years, and his For tickets, sponsorships, or to donate will serve as honorary chairs of the company has been the presenting auction items, please contact Betsy 29th Annual Golisano Children’s sponsor of the Gala since 2008. The Findlay at 585-273-5933 or Hospital Gala at the Rochester Riverside Cabot Group was a 2010 Miracle Maker bfi[email protected]. Convention Center on Oct. 22. During their time at the children’s hospital, Jennifer, Vinnie, and Jennifer’s colleagues at 13WHAM led the creation of Grace’s Garden, committing $350,000 to the outdoor garden, that provides patients a healing change of scenery during their Vinnie Esposito and Jennifer Johnson, from 2012 with Avery and Grace. STRONG KIDS NEWS | 2016 VOLUME –3 2 Fair port Musi cFestiva l an Instrument of Hope 3 he noise you’re hearing from the Fairport Music 6 p.m. including bounce houses, arts and crafts, and more! Festival isn’t just great music. It’s the sound of “The Fairport Music Festival is one of the largest thousands of people coming together in support community events that supports Golisano Children’s of the region’s only children’s hospital. The beat Hospital, and it’s also one of the most well-run, enjoyable T goes on – to the tune of $923,328 in 11 years, events of the summer,” said Stephanie Sheets, assistant and organizers Rob Burch and Andy McDermott don’t plan director of community affairs at Golisano Children’s Hospital. on slowing down any time soon. “If you ask anyone who has been to the festival, they’ll tell “The children’s hospital benefits so many in Western you they never want to miss it, and that’s a testament to the New York,” said McDermott. “It’s important to help when work that Andy McDermott, Rob Burch, and their committee the hospital means so much to the community.” do, not only for the festival, but for the community as well.” Started in 2005, the Fairport Music Festival has grown With the support of children’s hospital advocates and the exponentially and become one of the most anticipated Fairport community, last year’s festival raised $154,827.16. community fundraisers of the year. With dozens of bands, In addition to funding multiple items in the old children’s food vendors galore and numerous activities for kids hospital, funds from the event have also supported the culminating at the end of the summer along the Erie Canal, 7th floor Play Room, a large Nurse Manager station, two many have it bookmarked on their calendar months in giraffe omnibeds for the neonatal intensive care unit, advance. This year’s 12th annual Fairport Music Festival will a pediatric anesthesia machine, and many more furnishings take place on Friday, August 26 and Saturday, August 27, 2016 in the new children’s hospital. along Liftbridge Lane. “It’s a hobby for us, so it really doesn’t seem like work,” “We strive for excellence in the festival with the idea explained Burch. “One would be hard-pressed to find a more that the money will flow to the children’s hospital from that,” worthwhile hobby than helping the children in our said McDermott. community.” Fairport Music Festival will kick off on Friday at 5 p.m. Buy your tickets online now until August 25 for the with three bands playing on the festival’s Railroad Stage. special price of $15. Tickets will be sold at the gate for The fun will continue Saturday from noon to 10 p.m. $20 on Friday and Saturday. One ticket gets you event access and will feature music on four different stages, with more for both nights. Kids ages 12 and under are free. Discounted than 30 bands performing. Guests will enjoy a variety of food tickets are available with sponsorships. offerings, with favorites from local food trucks and nearby Fairport eateries. With entertainment for everyone in the To learn more about the event and to purchase tickets, visit family, the day will also feature kids’ activities from noon to www.fairportmusicfestival.com. SSTRTROONNGG K KIDIDSS N NEEWWS S | 2016 VOLUME –3 4 The courage, blessings of children, families on display Stroll for Strong Kids raises close to $400,000 for Golisano Children’s Hospital The Stroll for Strong Kids and 5K Run has evolved into a true The sun was shining down as 5K runners took their marks community event showcasing the inspiring children treated at to kick off the day at 8:30 a.m.