UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS
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Full Speed Ahead: Pediatrics Researchers Take On COVID-19
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New Pediatrics Scholarship Program Will Address Health Inequities Golisano Children’s Hospital | 2020– V3
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The end of 2020 is near, and – contrary to how these annual-messages typically go – it was a year most of us would like to forget. My last message to you was in the Spring, when the initial COVID surge was hitting Monroe County. Since then, COVID has subsided and now returned, and in between, we witnessed a Summer of injustice and unrest, which eventually shook our own community to its core with the death of Daniel Prude. The University of Rochester Medical Center, and its Department of Pediatrics and Golisano Children’s Hospital, supports the need for systemic change in our institution, the community, our nation and the world. A simple statement of support won’t be satisfactory, however. To be allies in the struggle to combat racism, we must change how we operate and think internally, and also must actively address racial inequities in our community to create a brighter future for Rochester’s children. Our first step, covered in this issue, is the launch of the Douglass – Anthony Scholarship, which will provide grant support for our residents and fellows to study health inequities in our community and develop solutions for systemic changes. This is merely the first step in a comprehensive anti-racism plan that we are developing in collaboration with the center, which we will unveil in full in the next issue. Lastly, we can’t close out the year without a high note, and we have several. First, I would like to congratulate Nanda Kerkar, M.D., and her Pediatric Liver Clinic team for successfully performing its first pediatric liver transplant. It was a milestone several years in the making, and it will likely take several more years to build capacity for a full program, but this first step is a huge one for proving viability and expanding our hospital’s capabilities. Finally, I want to thank the investigators highlighted in this issue for contributing to vital pediatric COVID-19 research. As pediatricians, we are fortunate that the disease impacts children less severely, but our growing knowledge on how the virus affects kids will benefit treatment and prevention strategies for both children and adults in the future. So, while 2020 may be a year to forget, I see signs that our community has weathered the storm and will emerge next year stronger than ever. Let’s get the recovery process started.
Patrick Brophy, MD, MHCDS Physician-in-Chief, Golisano Children’s Hospital William H. Eilinger Chair of Pediatrics
Golisano Children’s Hospital Board of Directors Mike Goonan, Chair* Daan Braveman Mike Buckley Steve Carl Al Chesonis Jeffery Davis Roger Friedlander Jay W. Gelb John Halleran James E. Hammer Howard Jacobson Todd Levine Scott Marshall Gary Mauro Kim McCluski* Kathy Parrinello, R.N., Ph.D. Brian Pasley Dante Pennacchia
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Ann Pettinella Jenni Ralph* Mark Siewert* Mike Smith* Steven Terrigino Donald Tomeny James G. Vazzana Alan Wood Bruce B. Zicari II
Faculty
Kate Ackerman, M.D. Marjorie Arca, M.D. Susan Bezek, M.S., R.N., P.N.P. - B.C. Jill Cholette, M.D. Clinton Morrison, M.D. Michael Scharf, M.D
Honorary Members. Michael Amalfi Bradford C. Berk, M.D., Ph.D. Mitchell Chess, M.D. David F. Christa Judy Columbus John L. DiMarco II Wanda B. Edgcomb Harvey B. Erdle Timothy D. Fournier Jack Goodrich Deborah Haen Nick Juskiw Richard E. Kreipe, M.D. Elizabeth R. McAnarney, M.D.* Thomas McInerny, M.D. Karen Powers, M.D.
Gail Riggs, Ph.D. Nancy Robbins Jeffrey Rubenstein, M.D., M.P.H.
Ex-Officio
Kellie Anderson* Patrick Brophy, M.D., MHCDS Steven I. Goldstein Jennifer Johnson Douglas W. Phillips R. Scott Rasmussen* Mark Taubman, M.D.
*Executive Committee
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Liver Transplant During Pandemic a Milestone Years of coordination culminate in successful surgery for 18-year-old patient Golisano Children’s Hospital
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First Liver Transplant a Milestone for Hospital
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First Liver Transplant a Milestone for Hospital
For Nanda Kerkar, M.D., performing a liver transplant is a ‘team sport.’
Ever since joining Golisano Children’s Hospital in 2017 as the director of Pediatric Liver Disease and Liver Transplantation, she’s worked with a single goal – to be able to do liver transplants for children living in Upstate New York. She’s collaborated with a group of surgeons, hepatologists, pharmacists, anesthesiologists, intensivists, nurses and physicians to prepare for the first transplant and pave the way for a viable and sustainable program. “It’s like preparing a dish,” said Kerkar. “Your entree may be fabulous, but if everything else isn’t brought together properly, it doesn’t work. And while the medical and surgical teams are key, input from the patient and family is also critical for good outcomes.” For several years, Kerkar and her team methodically put the pieces into place, and in late 2019 they identified their first patient, 18-year-old Margaret Giordano. Then, after several months of trying to secure a liver, the first surgery came together in a flash. “They called and asked us, ‘can you and Maggie be in the hospital in 15 minutes,’” said Laurie Vahey, Maggie’s mother. Fifteen minutes was a tight turnaround time, but Maggie’s bag was already packed, and for the family, relief couldn’t come any sooner. An Unmanageable Condition Maggie was born with Crigler-Najjar Syndrome (CNS), a genetic disorder in which the liver enzyme that processes bilirubin — an orange-yellow bile pigment that is a byproduct of the natural breakdown of old red blood cells — is not produced in the quantity required. As a result, bilirubin begins to build up in the body resulting in jaundice, which causes yellowing of the eyes and skin. If untreated, this build-up can cross the blood brain barrier and cause excess fatigue, hearing loss, decline of cognitive functioning, and even death. There are two recognized types of CNS: Type one doesn’t make any of the enzyme, typically necessitating immediate treatment and transplant surgery during infancy. Type two of the syndrome usually makes enough of the enzyme so medical treatment is usually sufficient. Maggie, however, had a unique version that Laurie refers to as “type one-and-a-half:” not needing surgery as an infant but necessitating more extensive treatment. It befuddled many of the pediatricians who saw her. “They didn’t know what to do with someone like Maggie,” said Laurie. “One doctor told me she would not live to be 2 years old.”
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First Liver Transplant a Milestone for Hospital
Nanda Kerkar, M.D., examines Maggie Giordano
“ They didn’t know what to do with someone like Maggie,” said Laurie. “One doctor told me she would not live to be 2 years old.”
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The parents searched for someone who could treat her, eventually finding Holmes Morton, M.D., in Lancaster, Pa. Morton was one of the foremost experts on CNS and also metabolic disorders, having studied and treated the syndrome for patients in Lancaster’s Amish country. Morton prescribed Maggie a regimen of medications and phototherapy treatment. Every night, Maggie would sleep under a bank of 2-by-2 foot fluorescent lights for eight to 12 hours. “We did it while she was sleeping so she wouldn’t be blindfolded during the day,” said Laurie. For several years, Maggie was able to manage with this treatment. As she got older and bigger, however, these lights became less effective, so the family purchased larger LED lights from a Dutch company. While these lights were more powerful and reduced the amount of needed phototherapy to one hour a day, the therapy was harsh and Maggie’s condition worsened still, with the jaundice increasing. In addition, Maggie was increasingly fatigued. “Growing up, she would participate in softball, swimming and karate. Around middle school she had to start dropping sports, and by high school, she was sleeping 12 to 18 hours a day,” said Laurie. Fatigue was only the tip of the iceberg. Sudden illnesses or injuries presented immediate concerns and Maggie started losing hearing in one of her ears, regularly struggled to think clearly, and had to be vigilant about staying hydrated, as dehydration can cause bilirubin to spike to dangerous levels. “If you look at 0-10, with 10 being brain damage, Maggie’s buffer was becoming less and less,” said Laurie. In addition, Maggie — being an outstanding student despite her challenges — was graduating high school, and would potentially face enormous difficulties trying to start a life away from home in college. The 6-by-4 foot lights she used weighed hundreds of pounds, and Maggie — in her condition — needed someone to help her when she had episodes where she couldn’t think clearly. The family began to consider surgery. The first step was transitioning away from UPMC Children’s Hospital of Pittsburgh, where Maggie had received treatment since she was 8. A major staffing transition had left them feeling less comfortable with their care, so they decided to meet with Kerkar at GCH. The family immediately felt at ease, as Kerkar demonstrated both compassion for Maggie and a willingness to study her condition inside-and-out. “I don’t give praise without it being due, but the woman (Kerkar) is a powerhouse,” said Laurie. “Besides the fact that she’s very intelligent, she is also the most driven and caring doctor for Maggie that I’ve ever met.” An Uphill Battle – and an Unexpected Break The family had extensive discussions with Kerkar and surgeon Koji Tomiyama, M.D., Ph.D., a member of the UR Medicine Transplant team and surgical director of pediatric liver transplantation. Both briefed the family on the risks of the surgery. “Tomiyama is great with patients. He listens and wants to do it right rather than just doing it,” said Laurie. The family ultimately decided to move forward. There was one significant obstacle, however: in order to get additional points on the waitlist for a deceased donor liver transplant, their case would have to be approved by the National Liver Review Board. Each year, there are around 8,000 adult liver transplants and 600 pediatric transplants, according to the American Liver Foundation. At any time, there are as many as 14,000
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First Liver Transplant a Milestone for Hospital
people on the waiting list. Each person in line for a liver transplant gets assigned a score in a particular region, and in the case of Maggie’s family, they were in competition with a lot of candidates from downstate New York. To determine who gets approved for a transplant during this competitive process, the board allots a certain amount of points per case. Patients are assigned these points depending on their blood group, blood test results, and severity of liver status. Because Maggie’s condition did not seem urgent on the surface, she did not have the necessary points. Kerkar tried appealing to the National Review Board of which she is a member, but could not vote on this case, as it was local. “If you feel as a physician that the patient is more sick clinically than the calculated points reflect, you can write to the appeal board. I wrote to them but the appeal was turned down, then I modified it with the help of many details provided by Maggie’s mother and re-sent it requesting for lesser points than the earlier appeal, but unfortunately, it was still turned down,” said Kerkar. “I realized she was not going to get an organ by the conventional route.” Despite Kerkar’s best efforts, Maggie’s family transitioned toward looking for a living donor. They assembled a list of candidates and then began the process of blood testing to determine the right match. Then, COVID-19 hit and upended the whole process. While New York City and its suburbs got hit hard – necessitating the prolonged cancellation of many elective surgeries in downstate hospitals, Rochester and Monroe County experienced a manageable COVID case load, and URMC continued deceased donor transplants through the pandemic and resumed nearly all types of surgeries by May and June.
“ I realized she was not going to get an organ by the conventional route.”
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First Liver Transplant a Milestone for Hospital
“ I’m glad we just decided to move forward; no regrets about doing things different.”
A long awaited change in liver allocation occurred in February and that change, combined with some shifting organ availability due to COVID, benefitted patients in the region. Shortly after activating Maggie on the list, a liver became available. Kerkar then worked to see if everyone was comfortable and prepared – from the family to the surgery, intensive care and support teams – to conduct the first pediatric liver transplant during a pandemic. “It required lot of thinking through and making sure we were all on the same page,” said Kerkar, “We were lucky that our surgical team was quite brave and ready to move forward, and they’d done a few adult ones successfully during the pandemic, so I felt comfortable with my patient taking this risk, particularly as I was fortunate enough to have Maggie and her parents completely on-board with the plan of moving forward during the COVID environment.” When the family got the call on June 24 that their surgery was approved, it was hard to believe. “I was in shock, I thought they were fibbing,” said Maggie. But there was no hesitation; they headed to the hospital. Coming Together as a Team The core surgery team was ready. Kerkar had spent several years leading pediatric transplant teams at the Mount Sinai Hospital in New York and Children’s Hospital of Los Angeles, and Tomiyama has more than 10 years of experience conducting both adult and pediatric surgeries. In addition, given that Maggie was adult-sized, she wouldn’t present the same challenges as younger kids. “For little kids, you have to deal with much smaller connections between the vessels and bile duct,” said Tomiyama, “Maggie was a more straightforward case.” Ensuring success of the surgery and recovery, however, meant extensive
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First Liver Transplant a Milestone for Hospital collaboration among several units in the hospital. The anesthesia team, for example, had experience operating on previous adult liver transplant cases, but had only ever transferred patients to the Surgical Intensive Care Unit (SICU). “As an adult ICU physician, I am very familiar with the SICU since I work there and know all of the staff well. The Pediatric Intensive Care Unit (PICU) staff are excellent, but I was unfamiliar with them and they were unfamiliar with me,” said Joseph Dooley, M.D., professor in the Department of Anesthesia, “There are some differences in patient management for pediatric patients versus adults – such as sedation and glycemic control – that we worked together to manage.” In turn, the PICU unit worked to educate the nursing and provider teams to implement multi-disciplinary patient management with the Hepatology, Surgical and ICU units. “During the process, we learned that our team can provide the excellent post-operative intensive care and ICU monitoring that these complex patients require, and do so with a focus on familycentered multi-disciplinary care,” said Jill Cholette, M.D., medical director of the Pediatric Cardiac Care Center. The preparation of all teams – particularly with the added dimension of the pandemic – was noticeable to Laurie. “The hospital had procedures in place, and everyone wore masks and was organized,” she said, “the treatment in the PICU was superb, she was able to get the care and medication she needed right away. It was incredible that she was able to go home after only six days”
to increase volume and eventually treat younger children. Donations and support can assist with the hiring of faculty to fill these positions. Ultimately, this first surgery will have a major impact on GCH’s ability to serve kids in the region, according to Patrick Brophy, M.D., chair in the Department of Pediatrics. “Getting the surgical structure in place for kids, and the ability of having pediatric long-term care for kids getting a liver transplant, expands our service capabilities and keeps kids in the region rather than having to go out-of-state for transplants or to New York City.” For Kerkar, this first surgery will set the foundation for a successful transplant program for kids of all sizes; all the more important considering the risks involved. “If we hadn’t done it, how long would we have to wait to eventually get the organ for them? This is one of those cases where I’m glad we just decided to move forward; no regrets about doing things different,” she said.
Recovery – and Future Shortly after the surgery, Maggie was able to participate in a major milestone. On July 25, she was walked across the stage and got her diploma with her cap-and-gown on, something that would have been unthinkable a few months ago with her liver condition and the pandemic. Maggie plans to take a gap year before looking to enroll in college in the Fall of 2021. In the meantime, she is enjoying life again, and is sharper and more active than she’s ever been. “Her clarity of thought is awesome, and she now has the ability to go away and do things that she wouldn’t be able to before,” said Laurie. After this first success, the GCH liver transplant program is looking to build capacity in both surgery unit and supporting teams. One goal will be developing a core group of our pediatric anesthesiologists to subspecialize in pediatric transplantation, according to Dooley. Another will be potentially adding surgeons
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Full Speed Ahead: Pediatrics Researchers Take On COVID-19 While the primary threat of COVID-19 – thus far – is to older adults, many researchers across the Department of Pediatrics have shifted the focus of their work to better understand how the virus interacts with children. The following three stories detail how the Department is leading the way in helping to solve questions posed by the novel virus, including understanding how it interacts with breast milk, why children’s lungs seemingly aren’t affected as severely as adults, and how trainees are collaborating in state-of-the-art labs to study Sars-Cov-2 on a molecular level.
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Full Speed Ahead: Pediatrics Researchers Take On COVID-19
URMC Lung Program to Compare Effects of COVID-19 on Children and Adult Lungs For years, researchers at the University of Rochester Medical Center have been studying the fundamental processes in human lung growth and maturation as part of the NIH-sponsored Lung Development Molecular Atlas Program (LungMAP) and the Human BioMolecular Atlas Program (HuBMAP) collaboratives. These efforts include many URMC researchers and has been led by Gloria Pryhuber, M.D., professor in the Department of Pediatrics. Now, with the onset of COVID-19, the LungMAP and HuBMAP programs are pivoting to study the effects of the COVID-19 virus on the human lung. The LungMAP program was recently awarded $1.36 million from the National Heart Lung and Blood Institute (NHLBI) to provide single cell level transcriptomic and protein analyses of parenchymal and resident immune cells in pediatric as compared to adult human lungs with and without COVID-19 infection. Pryhuber’s lab has already been providing data on lung development and will provide unique cells and tissues for the study of COVID-19 lung injury. This new funding will help understand COVID’s effects on children’s lungs. “Our program is unique in our ability to study human lung, while most programs study mice or other models,” said Pryhuber, “The LungMAP and HuBMAP programs are creating an atlas of the lung, mapping the organ down to each single cell. At URMC, our strength is uniquely focused on studying the lung at the single cell level in the pediatric age range, when so much lung growth is happening while the chance of lung injury by infection, asthma and the environment is also high.” For Pryhuber, the focus of this COVID research will be to examine why children get the infection at a lower rate and remain more asymptomatic than the older population. One of Pryhuber’s hypothesis–gathered from examining existing datasets–is that children don’t have as high an expression of the proteins and coreceptors that allow the virus to get into the lung cells. “For the virus to cause infection there has to be viral entry and replication machinery. We will continue to utilize our samples and datasets to identify what cells in the airway and lung express potential receptor and co-receptors. There is evidence that environmental exposures that come with age may enhance this machinery. With our data, we will try to understand what influences co-receptors in adults as opposed to children.” In addition to studying the expression of these viral entry proteins in human lung samples, Pryhuber and her team will be looking
Laboratory image of COVID-infected lung
at differences in the inflammatory response between adults and children. “With COVID, the concern is not so much the presence of infection, but the body’s response to infection. Humans try to get rid of the virus, but in the process we injure ourselves with the inflammation. We’re studying how children clear the virus with less inflammation, with the goal to seeing if we can modify the adult inflammatory response to get the same results.” Pryhuber’s research program has received national recognition for its unique and innovative abilities to study fundamental processes in human lung growth and maturation. Her lab created the BioRepository for Investigation of Diseases of the Lung (BRINDL) which now contains more than 280 human lung sets, with a subset that are normal by history and histopathology and more than 120 with a specified disease, spanning premature infants to adults. Working with the United States Organ Procurement and Transplantation Network (OPTN), the lab accepts donated organs when they cannot be placed for transplantation, and respectfully preserves and distributes lung to support molecular, temporal and spatial characterization of functionally and anatomically defined cell types. The work highlights the importance of the United States Transplantation Network and Donor Gifts for Research that goes well beyond organ transplantation. Where one donor can save eight recipients with transplanted organs, organ donation for research will reach thousands of people as new diagnoses and treatments are discovered.
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Full Speed Ahead: Pediatrics Researchers Take On COVID-19
Fellow and Resident Spotlight: Collaboration Drives Response to COVID-19 Prior to the COVID-19 outbreak, Christopher Anderson, Ph.D., a research fellow in the Department of Microbiology and Immunology, was studying Respiratory Syncytial Virus (RSV) to understand why the respiratory virus causes severe infections in babies. Across campus, Raven Osborn, resident and Ph.D. candidate working for Steve Dewhurst, Ph.D., in the Translational Biomedical Sciences program, was studying the influenza vaccine, using a bioinformatics network approach to understand why vaccine efficacy was so low in older populations as compared to young adults. She had just completed a research proposal and was planning to present it to a committee meeting last March when plans changed. “I was asked how I could change the focus to COVID,” said Osborn. As part of this transition to COVID research, both Anderson and Osborne are collaborating to gain a better understanding of how COVID-19 affects the human lungs. For Anderson, this was a marked shift as compared to studying RSV. “Only young children get severe disease from the RSV virus, but the general population generally does not,” he said, “then COVID
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came, and we started to see elderly people get severe disease, but younger children weren’t, so we set out to understand why.” Anderson conducts research as part of the LungMAP program lead by Gloria Pryhuber, M.D. The LungMap program studies human lung cells to build an “atlas” of the lung to a singular cell level. As a result, Anderson already has the infrastructure in place to transition to studying COVID-infected lungs in both children and adults. “We start off with a lung, that lung is processed into individual cells, these cells are handed to the LungMAP group, are put into a cell culture flask, and we supply those cells with what they need to grow — which means putting them into an air liquid interface where the bottom of the cells have liquid and the top have air — before handing them off the Raven,” said Anderson. Osborn then infects the cells with COVID-19 and uses a bioinformatics approach to understand how the virus is evading innate immune pathways and if there’s an age-related component to that evasion. This process — as one can imagine — requires extra safety measures. Osborn works in a Biosafety Level (BSL) 3 laboratory, which is relatively uncommon even among academic medical centers. Getting access to the lab involved a two-month
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security process for Osborn, and entering the lab — usually early in the morning or late at night — requires wearing a Tyvek hazmat suit. Osborn typically harvests infected COVID cells during this lab work, which can take up to three to four hours. After harvesting the COVID-infected cells, Osborn then studies the reaction to the virus. “We want to know at the single cell level what is going on with the genes. Is it changing the cell somehow?” said Osborn, “How does is effect the cells around it? What are the molecular interactions? COVID is particularly efficient at evading these antivirus signals, how is that different from what we’ve seen and what is making it more efficient at this evasion?” The opportunities for collaborative work between research labs is a major reason both Osborn and Anderson have settled at URMC long-term. Anderson, who moved to Rochester with his family from Boston appreciates the free and flexible approach.
Osborn came from Kansas City, MO, to complete a post-Bachelors of Science fellowship. She was drawn to URMC after reading an article on the bioinformatics work done at the institution, and has stayed in Rochester due in part to the strength of translational biomedical science program. “It emphasizes not just basic science, but science for clinical application and consumer products,” she said. While it’s too early to determine results from their project, both Anderson and Osborn are clear: while COVID may have similar characteristics to other, common-cold coronavirus strains, there are no easy answers at this point that explain its effects. “You can’t ask the same questions that would be asked about the flu, because there are no adults who haven’t seen the flu,” said Osborn. “We are still in the process of determine whether it’s age or the novelty of the virus that causes it to disproportionately affect older people.”
“You can collaborate with basically everybody here, and there isn’t a focus of having to stay in academia,” he said. Golisano Children’s Hospital
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Full Speed Ahead: Pediatrics Researchers Take On COVID-19
Joint Research Project to Study Evidence of Transmission and Antibodies in Breast Milk of COVID-19-Positive Mothers
Bridget Young, PhD, Kirsi Jarvinen-Seppo, M.D., Ph.D., and Antti Seppo, Ph.D. Other co-investigators include Casey Rosen-Carole, M.D., and Martin Zand, M.D., Ph.D.
A collaborative project between researchers at the University of Rochester Medical Center (URMC), New York University (NYU) and University of Idaho will examine whether mothers can transmit COVID-19 through breast milk, and whether the breast milk itself has immunological properties against the disease. URMC was funded more than $300,000 by the Bill and Melinda Gates Foundation and the National Institutes of Health (NIH) for roughly $600,000. The next two years for this study could result in critical guidance for an issue that currently lacks high-quality evidence. The research group is led by Dr. Kirsi Jarvinen-Seppo, M.D., Ph.D in the Department of Pediatrics.
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“Lots of viruses aren’t present in breast milk,” said Young. “If a mom has influenza, we don’t tell her to stop breast feeding her babies. A lot of factors in breast milk help keep babies healthy. Plus, there’s a lot of data showing that moms vaccinated against influenza provide specific influenza antibodies that help their infants remain healthy.” Young’s hypothesis is that similar to the flu, COVID-19 antibodies will be found in the mother’s breast milk. “We’re particularly interested in when antibodies may appear in breast milk, how long antibodies are present, and how much protection these antibodies provide the baby,” said Young.
Since the onset of the COVID-19 pandemic, major health organizations have often provided contradictory advice on whether and/or when to separate COVID-19 positive mothers and their newborns, according to co-investigator Bridget Young, Ph.D., assistant professor in the Department of Pediatrics at URMC. “We only want to sequester a mother from her baby if it’s medically necessary,” said Young. “However, the issue is very confusing for practitioners who don’t have sufficient evidence, and that’s what drove the urgency. We’re looking to drive the evidence so we can provide the best care.”
“Breast milk is a tricky sample to work with,” Young states “and collecting the samples in a manner that ensures no contamination is critical. Our team has a lot of experience conducting these types of breast milk studies and supporting breastfeeding parents.”
Thus far, there have been few studies that have examined breast milk in COVID-19 mothers, according to Young. Combined case reports of 68 breast milk samples found evidence of the virus in only nine; and whether or not detected virus is infectious remains unknown.
“A newborn baby nurses an average 10-12 times a day, so it’s important to know whether physical contact with the breast carries risk,” said Young.
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The study will examine breast milk from 50 COVID-19 positive mothers to gauge both transmission risk and evidence of antibodies. In addition to examining breast milk, the study will also determine whether the COVID-19 virus is detected on the physical breast itself by taking swabs before and after washing.
Currently, they have enrolled 20 women and are actively recruiting. If you are interested in participating, please contact immediately: Rita Ferri, Rita_Ferri @URMC.Rochester.edu.
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New Research Funding Initiative to Support Young Investigators As the previous articles illustrate, the Department of Pediatrics at URMC is leading the way on innovative research into COVID-19, with many early-career investigators making valuable contributions. Thanks to a partnership between pediatric researchers and the GCH Advancement division, a new funding initiative will seek to provide $25,000 to support individual young investigators who are undertaking pediatric research. These young investigators would be tenure-track assistant professors or post-doctoral fellows who already have a Ph.D degree and are on the path to obtain a tenure track position. This type of “seed” funding will be critical for fostering the careers of young researchers at URMC and could potentially pay dividends for institutional growth in the long-term, according Tom Mariani, Ph.D, professor of Neonatology and director of research for the Department of Pediatrics. “In addition to funding discovery and innovation, which could potentially save millions of lives, the career development of one investigator can be leveraged many times over to merit additional external funding, creation of new labs, and stimulate economic growth in the Rochester community.” Alan Wood, co-owner of the realty company RE/MAX Plus and supporter of GCH, and Lynne Maquat, PhD, endowed chair and professor in the Departments of Biochemistry and Biophysics, Oncology, and Pediatrics, developing this funding idea after Wood and his children — Tyler and Emily — visited Maquat’s Fragile X Syndrome lab this Fall. Fragile X Syndrome is the most common single-gene cause of autism and intellectual disability, and Wood’s family got a thorough education on the scope of Maquat’s work, which is examining disease-causing mutations in children, and what those mutations do to gene expression via RNA production. “My children loved getting first-hand experience touring the lab and seeing real-world visualizations of the work Maquat and her team are doing. Wearing lab coats and gloves, they isolated
Tyler and Emily Wood visit Lynne Maquat’s Fragile X Syndrome lab
genetic material from bananas, which turn out to have more genetic material than us humans,” said Wood. Wood will be leading the effort to develop the program and secure funding. Donors who sponsor a young investigator will be able to establish a relationship to learn more about their research as it evolves. “We have several talented young researchers in the Department of Pediatrics,” said Maquat. “Providing early support for their career is a long-term goal. The results won’t be immediate, but over time, this support will build the foundation for discovery that will improve kids’ lives.”
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A SPECIAL
TO OUR CHILDREN’S MIR ACLE NET WORK SPONSORS We’d like to give a special shout out to the sponsors who have supported the children’s hospital during the pandemic. These companies have continued to give back, despite the many challenges they have faced in 2020. We are very grateful for their efforts.
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Nothing Can Stop B&L Wholesale and their Customers’ and Suppliers’ Tradition of Generosity B&L Wholesale Supply has held an annual golf tournament to support the Golisano Children’s Hospital since 1995 — and it has grown into the largest event of its kind in Western New York. But with more than 432 golfers and 500 dinner participants every year, the organizers decided it wasn’t possible to hold the event in 2020.
The company’s support continues a longstanding tradition of generosity. Over the years, B&L has donated a total of $2.4 million to support the children’s hospital.
Don Tomeny, B&L president, sent out a letter to the event’s participants — many of whom are B&L customers — letting them know that they had to cancel it. The next day, Tomeny had received a handful of emails from B&L customers who still wanted to donate to the children’s hospital.
Last year, the golf tournament raised $189,000 for the new Golisano Pediatric Behavioral Health and Wellness Center, which opened this past summer. The company pledged a total of $500,000 toward the project, which will help address the growing mental health needs of the youth in our region.
“I was pleasantly surprised. That response had never really occurred to me,” said Tomeny. “We decided to send out a second letter — not asking for anything, but letting everyone know that if they wanted to donate, they could write a check to the children’s hospital, send it to me, and B&L would match it.”
Prior to that, the company raised $500,000 toward the PET/MRI suite, which features a revolutionary imaging machine available only in a handful of hospitals across the country. It has also supported the Pediatric Intensive Care Unit, the Pediatric Surgical Suite, and the Outpatient Treatment Center, among many other initiatives.
Tomeny expected to receive $4,000 or $5,000. He received more than $21,000. After B&L’s matching gift, the company was able to donate an incredible $42,940 to the children’s hospital. “It really happened naturally, which is what is cool to me,” said Tomeny. “It shows what this event has become over the years — it’s the event’s participants who are inspired to keep giving to the
Hospital, even when they aren’t obligated at all to do so. It really has taken on a life of its own.”
“We are always amazed by the support we receive from B&L, but this year, it is safe to say that we were blown away,” said R. Scott Rasmussen, assistant vice president for URMC Advancement. “Despite the fact that the event wasn’t able to take place and the many challenges we are all facing this year, B&L and its customers and suppliers still wanted to support our region’s children — and we are so grateful for their continued generosity.” Golisano Children’s Hospital
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New Pediatrics Scholarship Program Will Address Health Inequity A new program launched by the University of Rochester Medical Center Department of Pediatrics will train pediatricians and support their development in understanding and addressing health inequity through research and community engagement. Called the Frederick Douglass and Susan B. Anthony Scholars Program, this initiative will engage diverse community faculty representing child and adolescent health in multidisciplinary fields such as education, literacy, family systems, trauma, and mental health. The program will help scholars acquire skills to advocate for policy-level change addressing health inequity and its impact on groups historically underrepresented in medicine, such as Black, Latinx, and American Indian/Alaskan Native individuals, as well as women and LGBTQ+ individuals. “With demands for structural change sweeping the nation, now – more than ever – is a critical time to launch this program addressing health equity and encourage our trainees to advocate for reforms that will help our most historically marginalized communities,” said Patrick Brophy, M.D., chair of the Department of Pediatrics.
These projects represent a diverse range of subjects that address clinical, educational, and technological inequities. Fellow Ariel Reinish’s project will focus on quality improvement for the online patient portal, increasing access while protecting confidentiality for teenagers. “When I began my Academic General Pediatrics fellowship, I became increasingly interested in how the electronic medical record serves as a valuable clinical tool but can also compromise confidentiality for adolescent patients, particularly through unintended parent/guardian portal proxy access.” said Reinish, “We know that when teenagers have concerns about their confidentiality, they are less likely to seek healthcare, including important preventative, reproductive, and mental health services. Furthermore, unintended disclosure of sensitive information, such as sexual activity or LGBTQI identity, can lead to further physical and mental health disparities for teenagers.” Resident Jennifer Baxter’s project is aimed at addressing inequity in breastfeeding rates in Rochester’s communities of color.
The inaugural scholars will study the following subjects: Terace Thomas, M.D. (resident) – enhancing successful transition to adulthood for youth aging out of foster care Matthew Present, M.D. (resident) –
increasing school readiness for youth ages 0-5 by building home libraries for children and families
Jennifer Baxter, D.O. (resident) –
supporting breastfeeding for families of color
Ariel Reinish, M.D. (fellow) – safeguarding adolescent confidentiality in electronic health records Veronica Kwiatkowski, M.D. (fellow) – improving quality of life for children with eczema
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“After looking into the data, I found that there are significant racial, ethnic, and economic disparities with regard within the City of Rochester, and I am hoping to reduce these disparities through improved education and resources for both providers and for parents,” said Baxter. “Additionally, I intend to advocate for improved socioeconomic support for breastfeeding in Monroe County to help remove some of the greatest barriers to breastfeeding that my patients are facing in the community so that all babies and mothers have the support they need.” Every Scholar’s project will include tenets of communitybased approaches and include community voices in planning and dissemination — even for projects working within the academic health center. The Scholars program is framed within the Biopsychosocial Model, in which health is viewed as allencompassing and occurring well outside of our health systems in the communities where children live, study, and play.
Scholars will also have a mentorship team from across the Department, Medical Center, and University. This may include faculty from the River Campus Susan B Anthony Institute for Gender, Sexuality, and Women’s Studies and the Fredrick Douglass Institute for African and African-American Studies, faculty from URMC Public Health Sciences, and core mentorship from the Department of Pediatrics, particularly through the Hoekelman Center for Health Beyond Medicine, led by Andy Aligne M.D. Ph.D. Scholars will be expected to present their work at both regional and national meetings. “In launching this program, we hope URMC can build on our nationwide leadership in training residents and fellows to help create social change beyond our hospital walls,” said Katherine Greenberg, M.D., vice-chair for diversity and culture development, “and provide evidence for how academic medical centers can use their resources to make transformational changes in the communities they serve.”
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Community Rallies to Support Children at the First-Ever Virtual
for next year, when we hope to be back in Genesee Valley Park
JUNE 5, 2021 20
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The Stroll for Strong Kids and 5K looked different this year — there wasn’t a large gathering in Genesee Valley Park, and families weren’t able to celebrate with their fellow teams and hospital staff members.
A BIG THANK YOU TO OUR SPONSORS:
But despite the challenges, the Stroll still had the same generous, fun spirit — thanks to the hospital’s incredible supporters throughout the region and beyond.
Abbott’s Frozen Custard, presenting sponsor
As part of the event — the first-ever “virtual” Stroll — teams donned their Stroll T-shirts, decorated their lawns, and went for a socially distanced walk or jog to raise funds for Golisano Children’s Hospital. Teams took part from as far away as California and South Carolina and came up with unique ways to celebrate — some made costumes for their dogs, while others went for a hike in a nearby park. The top fundraising team, Remembering Baby Ricky, organized a stroll in their neighborhood complete with photo opportunities, music at the finish line, motivational chalk on the route, and food trucks. They also created bracelets to sell as part of their fundraising efforts. “We were all amazed by the efforts of everyone in our community this year,” said Meghan Barnhardt, associate director of community affairs and events. “We know the stresses that everyone has been facing over the past few months, and despite those challenges, our supporters still found creative ways to raise funds and show their support for the hospital. Many individuals took part in honor or memory of a loved one — including this year’s top fundraiser, Kim Winter. Kim and her family have taken part in the event in honor of her son, Craig, who was 2 when he was diagnosed with cancer and still receives care at the hospital. “The Stroll means so much to our family. Seeing so much support for Craig—and for the many other families and children who have been helped by the hospital—fills our hearts with so much gratitude,” says Kim. The event, which was dedicated to the health care workers and essential staff who have worked tirelessly through the pandemic, raised an incredible $310,000.
GCH Board Sponsors: Mark & Marcia Siewert, who donated $25,000 to the event and created a board challenge that raised $50,000 total Nick Juskiw Mike Buckley Mike & Judy Goonan Brian & Barbara Pasley Don & Leslie Tomeny Marshall Farms Group Dr. Pat & Jodi Brophy Daan Braveman Presenting Sponsor: Abbott’s Frozen Custard Silver Sponsors: Alan Wood Team, Cooley, J.T. Mauro Co. Inc., LaBella, Morgan Stanley Bronze Sponsors: Beltz Ianni & Associates, C.P. Ward, Excellus, Genesis Pediatrics, LeChase Construction, Lewis Pediatrics, More Than a Game Foundation, Eastside Pediatrics, The Summit Federal Credit Union, LA Livingston Associates, US Ceiling Corp., Blue Apple, Subway, and Zweigle’s
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Golfers Tee Off to Support Children’s Hospital More than 300 participants raised $230,000 for Golisano Children’s Hospital at the annual golf tournament this past August. Held at Monroe Country Club and Oak Hill Country Club, the event draws participants from all over the region. “The tournament looked a bit different in 2020, but we were so glad we were able to go on with it in a fun and safe way,” said Betsy Findlay, director of special events. “We are very grateful for everyone’s support and generosity.”
A special thank you to the more than 65 sponsors who supported this year’s event, including:
Presenting Sponsor Accurate Acoustical
Platinum Sponsor Vizient
Major Sponsors Corporate Woods Associates, LLC, DELL Computers, Infinidat, Mainline Information Systems, Postler & Jaeckle Corp., Rochester Davis Fetch Corp., Tremco Roofing, Trident Precision Manufacturing, Inc.
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Save the date for next year AUGUST 30, 2021!
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Support Doesn’t Miss a Beat During First Vırtual Gala No Party, no problem! Our first ever Golisano Children’s Hospital was a great success! Broadcast on 13WHAM ABC, Honorary Chairs, Dr. and Mrs. Patrick and Jodi Brophy, along with Jennifer Johnson and 13WHAM’s Michael Schwartz, helped bring in an amazing $750,000 through sponsorships, fund-in-need and community donations. The phone lines were busy as we kicked off the event with an incredible matching donation of $200,000 from our very generous friends, Mark and Maureen Davitt. This year brought many changes – instead of an in-person event at the Convention Center, our sponsors generously gave back to provide over 700 meals to our amazing frontline workers whose tireless efforts over the past several months kept our hospital running smoothly during the challenges brought on by the pandemic. Sponsors also provided more than 150 gift bags to our patient families.
Pat and Jod iB Honorary Ch rophy, 2020 Gala airs
milies Patient fa a received wonderful r u gif t from o rs so spon
This year’s fund-in-need focused on acquiring new cardiorenal pediatric dialysis emergency machines (CARPEDIEM) which are the first continuous renal replacement therapy (CRRT) machines designed for neonates. This effort brought in generous contributions from Don and Leslie Tomeny, Fairport Music Festival, Doug and Abby Bennett and the Sands Foundation and many other donations. We successfully raised enough funds to purchase three new machines which will be critical for treating the smallest infants with acute kidney injury (AKI). During the evening, 15-year Brianna Collichio, a cystic fibrosis patient at Golisano Children’s Hospital, provided a beautiful performance. Brianna lit up the room with her incredible voice. Thanks to all who watched and supported this year’s Virtual Gala!
Brianna Collichio, CF patient provides an amazing performance 24
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Special thanks to the following major sponsors – as well as all other sponsors - for their support in making this year’s Gala a tremendous success:
Present i ng Sp o nso r
ard memb n s a n d Bo a ci si y h p s, GCH nurse answered phones
ers
THE CABOT GROUP Diamond Stud Sponsors Mark and Maureen Davitt Nick and Barbara Juskiw & Family Paychex Ed & Ann Pettinella Spall Management Corp. Tops Friendly Markets
Pl at i num Sp urs Sp o ns ors LeChase Construction Rainaldi Brothers, Inc. William & Mildred Levine Foundation
G o l d Mi ner Spo nso rs
MVP Healthcare URMC Dept. of Orthopaedics & Physical Performance
Si lver Saddl e Sp o nsors GCH Sta
f f and B oar the succ d gather to cele ess ful e b ra t e ve n t
AAC Contracting Dermatology Associates of Rochester & Dermaspa Dixon Schwabl Advertising Erdle Foundation Fairport Music Festival Drs. Anne and Charles Francis/ Dr. & Mrs. Mark and Lois Taubman Halleran Financial Group Howard Hanna Real Estate Services Johnson Controls Dr. Elizabeth McAnarney Kim and Steve McCluski/ Michael Leone & Gillian Hargrave On Trac Auto Sales
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Tha n k y o u!
We ar e extre m e ly grate ful to o ur co m mu n ity fu ndra is ers.
Awareness challenge B&L Wholesale Corey Brown Childhood Cancer Cycle for Hope Daniel’s Race Andrew Divita Fairport Music Festival Howard Hanna Hear Me Now
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Josh Landscaping Music for Mom Roberts Wesleyan College Rossi “heartaversary” fundraiser Seyrek Sealers, LLC Smash Therapy fundraiser Stroll for Strong Kids virtual walk and 5K participants Western New York Optics
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Upcoming Community Events
Golisano Children’s Hospital Advancement Office
585.273.5948 | www.givetokids.urmc.edu
Note: all events subject to change if COVID-19 restrictions are in effect. Please visit www.urmc.rochester.edu/ childrens-hospital/ways-to-give/events for up-to-date information
June 5 Stroll for Strong Kids Genesee Valley Park, 1000 East River Road More information forthcoming – check givetokids.urmc.edu/stroll for updates.
August 30 Golf Classic Oak Hill East and West courses and Monroe Golf Club A great day of golf on three separate courses! For more information, or to register, please call 585-273-5948 or contact Betsy Findlay at bfindlay@admin.rochester.edu
October 23 Annual Gala Save the date! More details to follow in future issues
Scott Rasmussen Sr. Assistant Vice President for Advancement Betsy Findlay Sr. Director of Advancement, Special Events and Children’s Miracle Network John Belt Advancement Assistant Meghan Barnhardt Associate Director, Community Affairs Katie Keating Program Assistant Jennifer Paolucci Assistant Director, Special Events and Children’s Miracle Network
Public Relations and Communications 585.273.2840
Scott Hesel Sr. Public Relations Associate Jessica O’Leary Public Relations Associate Karen Ver Steeg Art Direction & Design
Find us on social media: facebook.com/GolisanoChildrensHospital twitter.com/urmed_gch instagram.com/urmed_gch Golisano Children’s Hospital
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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, have helped support Golisano Chidren’s hospital. Now, with the COVID-19 pandemic affecting the way we work with families and patients, we’re being proactive in continuing to provide the best and most comprehensive care in the region. So in the season of giving, we ask that you 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 2020 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.
To make a donation online go to givetokids.urmc.edu 28
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