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FALL 2014 A PUBLICATION OF MAGEE-WOMENS RESEARCH INSTITUTE & FOUNDATION 9 MONTHS TO 90 YEARS THIS GROUND-BREAKING STUDY IS DR. YOEL SADOVSKY’S PASSION AND IT COULD CHANGE HEALTH CARE FOR EVERYONE. PREGNANZZZZZ’S Can Better Sleep Make for a Healthier Mom and Baby THE SECRETS INSIDE US How Advances in Genetics Testing are Personalizing Medicine and Saving Lives A WOMB WITH A VIEW How NICView Cameras Help Parents Keep Their Eyes on Magee’s Littlest Patients www.mwrif.org MAGEE :: PAGE 1 VOLUME 9 | FALL 2014 MAGEE is published two times a year for supporters of Magee-Womens Research Institute & Foundation. If you have comments regarding the publication or would like additional copies, please email [email protected]. EDITOR Christine Caruso 4 10 4 18 24 9 MONTHS TO 90 YEARS This Ground-Breaking Study Could Change Health Care for Everyone CONTRIBUTING EDITORS W. Allen Hogge, MD, professor and chairman, Department of Obstetrics, Gynecology & Reproductive Sciences, University of Pittsburgh Yoel Sadovsky, MD, director, Magee-Womens Research Institute 10 THE SECRETS INSIDE US How Advances in Genetics Testing Are Personalizing Medicine and Saving Lives ADVISORY COUNCIL David Kaplan, chairman Board of Directors, Magee-Womens Research Institute Arthur M. Scully III, vice president, Development and Communications, Magee-Womens Research Institute 18 PREGNANZZZZZ’S Can Better Sleep Make for a Healthier Mom and Baby DESIGN & PRODUCTION Garrison Hughes VISIT OUR WEBSITE www.mwrif.org FOLLOW US SUBSCRIBE To receive free issues of MAGEE at home or to request additional copies, please email [email protected] with your full name, address, and phone number. We welcome your feedback on the publication. For the latest women’s health updates, giveaway contests, and upcoming events, visit our website and subscribe to our enewsletter. Please email [email protected] if you no longer wish to receive fundraising materials designed to support Magee-Womens Research Institute and Magee-Womens Hospital of UPMC. THANK YOU FOR YOUR CONTINUED SUPPORT OF MAGEE-WOMENS RESEARCH INSTITUTE & FOUNDATION. 9 Internship Program Sparks Interest with Future Women’s Health Researchers 15 Charting the Course: How Magee’s Navigator Program Helps Patients on the Path through Treatment 16 A Womb With a View– How NICView Cameras Help Parents Keep Their Eyes on Magee’s Littlest Patients 22 Endometrial Cancer Prevention and Obesity: Magee Epidemiologist Looks for Cancer Clues in Healthy People 24 Cancer Care Bags Offer Comfort to Patients 27 Lacing Up for Cancer Research 28 Thirty-five Years of Gratitude for Exceptional NICU Care 30 Mile After Mile, Joe Scarpaci Rides to Help Breast Cancer Patients 32 Noteworthy 34 Happenings 35 Morsels 35 Clinical Trials 9 MONTHS TO 90 YEARS THIS GROUND-BREAKING STUDY IS DR. YOEL SADOVSKY’S PASSION AND IT COULD CHANGE HEALTH CARE FOR EVERYONE. We spend nine months in pregnancy. How does that time impact our lifelong health — the next 90 or so years of our lives? That’s the question Yoel Sadovsky, MD, director, Magee-Womens Research Institute, and his colleagues want to answer. And that’s how the project 9-90 was born. “We’re trying to understand the impact of development and exposures to the environment, nutrition, education, infection, and other influences that occur during pregnancy. How do they impact lifelong health and wellness?” Although the question is not unique, Dr. Sadovsky is leading a most robust investigation, right here at Magee. “We have a large group of investigators who are focusing on the very beginning of life, even prior to formation of the fetus. We center on the germ cells in the ovaries and testes and how they form the embryo. We assess exposures and things that may happen normally and abnormally throughout pregnancy, and how they can potentially imprint in the fetus and result in a disease risk.” With 9-90, Sadovsky has high hopes for helping women, children, and men by promoting wellness and preventing diseases such as Type 2 diabetes, obesity, and heart disease. PICTURING A HEALTHIER FUTURE Over the last 20 years, research has linked the origin of some diseases and conditions to developmental stages. “This work was initiated by a British epidemiologist named David Barker,” says Dr. Sadovsky. “He was really one of the first ones to make this association between exposures in the uterus in pregnancy and adult diseases.” under-grown, perhaps weighing only 5 pounds because of nutritional deficiencies or because the mother has high blood pressure and has not been delivering enough blood to the uterus, that may predispose the baby to this set of diseases in adulthood. That’s an association that David Barker has made.” Dr. Sadovsky is using 9-90 to build on this research, taking a robust approach to a problem that could affect humankind. “We take pride not only in advancing knowledge, but also in how successfully and pragmatically we take our discoveries from the bench to the bedside. When we are looking through our microscopes, we keep in mind the middle-aged woman with high cholesterol, or the fetus who has inherited a trait that puts him at risk for a disease later in life,” Sadovsky said. “We are dedicated to finding ways to predicting these conditions earlier in life — when fetuses are in the womb — to result in healthier lives, throughout their lives. See the Secrets Inside Us article on page 10 for more examples of how our research impacts patients directly. THE STUMBLING BLOCKS Of course, research of this scope doesn’t come without challenges. First, there’s the difficulty of monitoring a pregnancy in real-time, from the beginning through birth. Then, as Dr. Sadovsky points out, “We don’t have direct access to the fetus. So everything that we study on the fetus is through the mother or through maternal exposures to the environment and so forth.” He explains that, typically, when you’re trying to define the health of an individual, you perform studies on that person directly, such as blood tests and other analyses, in an attempt to understand their biology. “With the fetus,” he adds, “we need to do everything in a manner that “We’re trying to decrease the incidence and severity of Type 2 Diabetes, either goes through the mom or uses innovative ways to try to obesity, high blood pressure, heart disease, and the consequences of interrogate the impact of those exposures and the health of the these conditions, like kidney failure, and stroke,” says Dr. Sadovsky. (continued) He believes that by better understanding intra-uterine exposures and intra-uterine development milestones, we can potentially mitigate those diseases — and not just in adults. “Here’s an example of a fetal condition that can be associated with these conditions. If a baby is MAGEE :: PAGE 4 MAGEE :: PAGE 5 “One of the reasons why we’re able to pursue this kind of research mother. Don’t forget that the mother is also the environment for the fetus. So through interrogation of the mother and the environment, we’re trying to obtain fetal material, fetal tissue, imaging of the fetus and the like, and trying to understand the process of imprinting in the fetus.” Another big challenge? “We may have to wait 90 years to understand the outcome of the impact of nine months of pregnancy.” Obviously, such a long-term study could exceed the lifetime of its researchers. “Therefore we have to use other systems that may mimic or capture the outcomes we’re after, or use surrogates for the outcomes we’re interested in. For example, if we have an indicator for the risk of heart disease that may develop at the age of 50, but that manifests at the age of three, we can potentially study a three-year-old child in research of a disease that wouldn’t be seen until decades later.” Knowledge in the field of pregnancy is another barrier. According to Dr. Sadovsky, “Understanding the developmental milestones that characterize normal pregnancy and how the body responds to exposures is a major challenge because our knowledge in the field of women’s health has been lagging over the years, compared to our knowledge of other areas or systems.” Dr. Sadovsky and his team are working to bridge that gap by studying normal development, normal physiology and pharmacology, as well as other techniques and disciplines that allow them to fully interrogate the development of the human embryo and fetus until it reaches maturity and is ready for delivery. A complete understanding of this normal development is an important step in understanding abnormalities. “That’s a big challenge, even if we had access to the fetus,” adds Dr. Sadovsky. But the fetus isn’t the only place to look for answers. One place that may offer a wealth of information is the placenta. He explains that the placenta, or afterbirth, functions for the fetus like the lungs, guts, liver, kidney, hormone producing system, and the immune system function as adults. “Many of these processes occur through the placenta. It really is the conduit of the fetus, and the communication tool of the fetus to the outside world, which includes the mother. So by further studying the placenta, we can gain insight into many of the challenges mentioned. Unfortunately, our understanding of placental function is very limited. Over the years, this organ has not received enough priority by investigators, the community, and funding agencies. We’re trying to change that.” MAGEE :: PAGE 6 at Magee is because we have assembled a critical mass of highly trained investigators and clinicians who come from diverse points of view, but can focus their interests on the placenta from those different angles. That’s a very powerful approach.” – Dr. Yoel Sadovsky A third component is working with researchers who understand outcomes. “These are scientists who’ve done long-term analyses using databases and bio banks — people who can make a link between exposures in the present time and future outcomes that are critical for adults’ health.” Dr. Sadovsky is reaching out to University of Pittsburgh researchers, as well as Carnegie Mellon University researchers to make sure that the core group is as robust as possible. “To be able to pursue this kind of research, it takes a combination of skills in the biology of genes and pregnancy, skills in the placenta, skills in the exposures, skills in the outcomes,” says Dr. Sadovsky. THE FIRST STEPS Not surprisingly, Dr. Sadovsky’s first year goal was solidifying a team with the required skills. “We’ve done this already,” says Dr. Sadovsky. “We have great talent here but we need to bolster our skills with even more investigators.” THE KEYS TO SUCCESS To understand fetal development and impacts on the embryo, job one is creating a team with great abilities to tackle the fetus and placenta from many perspectives. Between Magee-Womens Research Institute and the University of Pittsburgh, Dr. Sadovsky has attracted world-class investigators who focus on different aspects of pre-pregnancy, pregnancy, and post-pregnancy health. And Magee’s reputation as a leader in women’s health and research has made that part of his job easier. “One of the reasons why we’re able to pursue this kind of research at Magee is because we have assembled a critical mass of highly trained investigators and clinicians who come from diverse points of view, but can focus their interests on the placenta from those different angles. That’s a very powerful approach.” But he knows it takes more. “We’re also interacting and collaborating with other investigators who may not target the fetus and the embryo, but have a great understanding of how the environment can affect the biology of an individual. Our collaborators have knowledge in drug exposure, nutrition, infections, and other potential environmental influences that can affect the developing pregnancy.” “The effort will hopefully carry such a momentum that makes MWRI a magnet for others to join us either here or through collaboration, developing a real synergy for a very potent investigation. Then we can really harness the power of biology and epidemiology and study longterm diseases over a number of generations to be able to understand how these systems work.” A GREAT PLACE TO GROW An ambitious endeavor such as 9-90 comes with extraordinary demands. And Dr. Sadovsky believes MWRI is in the right place to achieve these goals. In addition to the breadth and quality of the Research Institute’s researchers, the Institute’s affiliation with Magee-Womens Hospital of UPMC bolsters its research capabilities. A third component is Magee-Womens Hospital of UPMC. “This is one of the largest women’s hospitals in the country,” says Sadovsky. “We have nearly 11,000 deliveries here. Our access to these histories and women who may want to participate in our studies is key to our success. The ability to follow up with these women is important as well.” Also key is the ability to create databases and bio banks from tissues such as placentas, blood, and blood materials. “The academic environment here in Pittsburgh is really second to none,” states Dr. Sadovsky. “Our success will largely depend on our ability to interact and collaborate with researchers who will bring new skills — not just in the field of pregnancy — but in other areas in biology and medicine, to help us achieve our goals.” Dr. Sadovsky is happy to point out that another great strength of performing research here each year is the community. “We have great supporters in our community. People have been reaching out to us to understand what we do and asking us how they can help. They really care about our outcomes. Many of our funders have, and I hope will continue to, come from our community.” He adds, “Don’t forget that Pittsburgh is one of those areas that had years of exposure to many adverse influences that occur in our environment. There have been generations of people here who have delivered at Magee years ago, and now their children and grandchildren are coming to deliver at Magee, and they have been exposed to all kinds of environmental components that used to be prevalent in Pittsburgh. Luckily, many of these environmental factors are gone now, but that material might have impacted the progeny of many people who live here. So having this research conducted in Pittsburgh, where we have access to multiple generations of families who have received care at our facilities is a tremendous asset.” (continued) One percent of women are pregnant at any one point in our life. But during pregnancy, women carry 100 percent of our future. And if we can impact better wellness through pregnancy and reduce the risk of disease later on, we can positively impact 100 percent of our future society. This is not just a women’s health issue; this is a humankind issue.” – Dr. Yoel Sadovsky MAGEE :: PAGE 7 A BIG INVESTMENT WITH BIG REWARDS Naturally, to perform research of this scope in a robust, impactful way requires significant investment. Community leaders, philanthropic support from both individuals and corporate donors, fundraising, and foundation support are all absolutely critical to Magee’s mission. But these are investments that Dr. Sadovsky believes will pay off in a radically healthier future. “If we are successful, we may be able to define health and wellness in unprecedented ways. For example, links between exposures during pregnancy and increased risk of disease in later life have already been made, but if we can understand how these associations work, and translate that research to understand a mechanism or understand how to better diagnose those diseases or even prevent an exposure, then we may potentially be able to mitigate adult diseases.” disease later on, we can positively impact 100 percent of our future society. This is not just a women’s health issue; this is a humankind issue.” Such ground-breaking and ambitious goals need a special place where they can be pursued. From the researchers in the labs and the doctors at the bedsides, to those providing financial support, Magee is at a special place point in time where such a renowned research institution is on the precipice of discovery that will impact all those who we care about. To add your support to research that promotes lifelong health for all, visit www.mwrif.org/donate. Dr. Sadovsky also wants to make sure everyone knows what is at stake, and who the research can ultimately help. “Many people tend to think that pregnancy is a women’s issue. People tend to forget that men and women are born to women. So if you think about it seriously, through improvement of health and promotion of wellness during pregnancy through better mitigation of potential adverse effects, we can potentially affect every person, women and men. One percent of women are pregnant at any one point in our life. But during pregnancy, women carry 100 percent of our future. And if we can impact better wellness through pregnancy and reduce the risk of MOTHER CHOLESTEROL PETERS EPIGENOME GROWTH, LIPIDS BARAK YANOWITZ NUTRITION CATOV SIMHAN LONG TERM OUTCOME IMPRINTS, RETROELEMENTS PHENYLALANINE, BRAIN, EPIGENOME FOLATE, TELOMERES ADIPOCYTES Schematic representation of the 9-90 program’s investigators and areas of research focus. MAGEE :: PAGE 8 Unlike many interns, the students in this program are able to take charge of important work. Alyssa Warth, a recent high school graduate, expected to serve in an assistant capacity. Instead, she was surprised to find that she was granted a high level of independence in developing a pilot program to teach mothers and daughters the importance of nutrition, physical activity, oral hygiene, and sleep. She appreciated the responsibility, which has helped prepare her for college at the University of California-Los Angeles (UCLA). Likewise, Kaetlyn Conner, a student at Vincentian Academy, was surprised and delighted that she was able to head her own experiment in the laboratory of Dr. Robert Edwards, director of Gynecologic Oncology at Magee. Her project focused on T-Cell Infiltration, which Dr. Edwards called “a very active area of research.” By giving these young people such responsibility, our investigators our investigators allow allow them them to contribute to contribute tremendously tremendously to our to our research research goals. goals. Individual donors make this program possible through their philanthropic support and have provided an important steppingstone stepping stonefor forthe theyouth youthwho whoparticipate participatein inthe theprogram. program.By Bygiving givingthese theseyoung youngpeople peoplethe the chance to take responsibility for impactful projects, they help instill a passion for women’s health in the next generation of scientists. TRANSGERNERATIONAL EFFECT (WORMS) KRISHNAMURTI You might not know the answers to these questions, but the youth in the Magee-Womens Research Institute Summer Internship Program do! Once again, high school and college students were welcomed into the labs to work side-by-side with our researchers, tackling a wide variety of areas and issues from genetics to diet in pregnancy. They presented their research at the 2014 College Student Presentation Day on June 20 and the 2014 High School Student Presentation Day on July 22 at the Research Institute. It’s not surprising that such an exceptional program draws students back for a second year. Margaret Gegick, a student at the University of Notre Dame, completed her second internship this summer. Working in the lab of Dr. Yoel Sadovsky, director of the Research Institute, she is continuing the work she started last year with the research goal of finding a system to study microRNA in mouse placenta. Like Puja, Margaret was drawn to the internship program by the prestige of Magee’s robust research program. Once here, she admired the passion her mentors had for women’s health, which she says, “… “…affects affectsall all humans and has the opportunity to help a lot of people.” She found their passion contagious, and welcomed the opportunity to return for a second year and become more deeply involved in this ground-breaking work. INFORMATION/COMMUNICATION LARKIN DOBROWOLSKI/RAJKOVIC FETUS MOLECULAR COMMUNICATION SADOVSKY HIMES/BODNAR PLACENTA Can you define consanguineous? How about emesis or spermatogenesis? Do you know what a knockout mouse is? Is that the same thing as an overexpressor mouse? And, what’s important about cisplatin-resistant cell lines? Do they even exist? The students also gain significant real world and laboratory experience in the program. While Alyssa had the opportunity to develop grant-writing skills in support of her pilot program, another student, Puja Tripuraneni, was introduced to work in a lab environment for the first time and had the opportunity to try a variety of tasks during her internship. Having researched numerous programs before applying to ours, she knew how unique such an opportunity is for a high school student. Combining hands-on experience with the chance to work with an impressive staff of investigators, the Magee-Womens Research Institute Summer Internship Program was the right fit for this ambitious young woman, who traveled from Fulton County, Georgia to participate. She looks forward to putting the skills she learned into action in her AP Biology course next year, and plans to apply for the college internship program in the future. Magee’s Ground-Breaking 9-90 Project Magee-Womens Research Institute Investigators Internship Program Sparks Interest with Future Women’s Health Researchers PATIENTS & FAMILIES You can help support this program – and the next generation of women’s health researchers – by donating today Established in 1995, at www.mwrif.org. the high school program has benefited 203 students. The application process begins in January and typically ends by April of each year. The college program began in 2002, and 154 undergraduate students have participated. It is currently accepting applicants for next summer, and the application process will run through Feb. 1, 2015. For more information or to apply, visit www.mwrif.org. To help support this program – and the next generation of women’s health researchers – make a donation at www.mwrif.org/donate. THE SECRETS INSIDE US How Advances in Genetics Testing Are Personalizing Medicine and Saving Lives What if an expectant father could pass along his love of baseball and not a genetic susceptibility? We all want to pass on the best of ourselves to our children. But genetics goes far beyond determining eye color and the shape of a nose. Our genes may carry diseases or abnormalities that can affect our lives and the lives of our children. And thankfully, researchers at Magee-Womens Research Institute are uncovering better ways to find those genes, provide appropriate counseling and intervene to improve outcomes. Dr. Aleksandar Rajkovic “With the advent of whole genome sequencing, our ability to diagnose a lot of intrauterine disorders will increase tremendously,” says Dr. Aleksandar Rajkovic, director of the Division of Reproductive Genetics at Magee. “With it, we’ll be able to much better prepare parents in terms of what problems the babies will have at the time of delivery, and hopefully it will also help with timely neonatal intervention.” IT’S CALLED PERINATAL PRECISION MEDICINE. And it’s improving our ability to make very early diagnoses – both in the womb and right after delivery. “Whole genome sequencing will allow us to quickly diagnose physically undecipherable medical conditions in many cases and allow us to perform interventions that will save babies’ lives,” says Dr. Rajkovic. (continued) MAGEE :: PAGE 10 MAGEE :: PAGE 11 Even before a couple conceives, there are genetic screenings that can determine the risk for passing on a particular disease. “For example, in Ashkenazi Jewish families, we offer screenings for 19 or more genes that are known to affect one in five Ashkenazi Jews, and we can see whether they’re at risk for having a baby that will be affected. So even before they become pregnant, you can basically give them a risk percentage of passing the gene on. If they are found to be carriers of the same disease, then you can do prenatal diagnosis to figure out whether the baby is affected of not.” With perinatal precision medicine and whole genome sequencing, doctors will be able to make much more accurate diagnoses, which will enable them to offer more tailored counseling and appropriate treatment for the baby and the couple. “We actually have genetic tests that help us make diagnoses in utero,” says Dr. Rajkovic. “When we need to perform an intervention, such as draining fluid out of the lungs or the heart, it is important for us to know whether the baby has a particular genetic condition. Genetic testing provides this information and allows us to tailor the fetal intervention for this individual.” The ability to diagnose conditions in utero will help doctors learn what particular interventions are effective on babies that have particular genetic variations. “Right now, we use ultrasound to diagnose certain things, but a lot of times ultrasound just tells us that there is a certain abnormality with the baby – it doesn’t tell us why. Genetic testing will allow us to complement the ultrasound by showing the doctor what other systems in the baby are affected. That will then help us see what the best interventions are for this particular baby. That’s the only way we can improve prenatal interventions, by really knowing the molecular causes of the fetal diseases,” says Dr. Rajkovic. THE GOOD NEWS ABOUT NON-INVASIVE TECHNIQUES. “We used to do a lot of fetal diagnosis – including screening for spina bifida and Downs Syndrome using invasive technology such as amniocentesis,” says Dr. Rajkovic. “But this has now changed to the point where we can do a lot of the diagnosis non-invasively, based on drawing blood from the mother.” To advance non-invasive prenatal diagnosis, Dr. Rajkovic collaborates with Dr. David Peters, a senior investigator at Magee-Womens Research Institute and an associate professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences at the University of Pittsburgh. Dr. Peters and his colleague, Dr Tianjiao Chu, developed a unique screening test for detecting whether babies have a chromosome abnormality such as Downs Syndrome in early pregnancy by taking a sample of the mother’s MAGEE :: PAGE 12 Magee offers two unique centers – the Center for Advanced Fetal Diagnostics, which offers cutting-edge testing and result interpretation and the Center for Advanced Fetal Intervention, which provides state-of-the-art in utero procedures, from ultrasound-guided fetal interventions to open fetal surgery. “Magee has just opened a new molecular genomic laboratory that has already begun testing for cystic fibrosis,” says Dr. Rajkovic. “In blood, extracting DNA from the plasma, and sequencing it. “It’s a the very near future, this lab plans to start offering whole genome method that’s very good at detecting anomalies,” says Dr. Peters. “The sequencing that will be available for diagnosing prenatal and previous screening test was far less accurate. One in 20 of all the post-natal conditions. We are dedicated to being able to provide mothers doing the old test would be tracked as having a possible precision medicine in the perinatal period to our families and their abnormality in the baby. They would then be referred for consultation future children.” and offered an invasive procedure like amniocentesis. The new test that we developed here at Magee is more accurate, so far fewer At Magee, we are also cultivating people who can carry on this women are referred for those invasive tests.” research into the future. “We have a training program in medical genetics and a medical genetic residency,” says Dr. Rajkovic. “We And the significance of that is tremendous. “You can lose your baby also have combined programs where individuals from obstetrics during an invasive test,” remarks Dr. Peters. “Of course, even if you and maternal fetal medicine or neonatology are trained in genetics.” don’t lose your baby, you’re counseled that you might, which can be worrisome to parents and create anxiety. This is why Magee is In addition, Dr. Rajkovic and his team are working to train at the forefront in the field of genetics. The work we are doing here individuals who put this knowledge into daily practice. “It’s not a is some of the most advanced genetics research being done in the small task,“ he says. “Sequencing a genome is actually fairly easy, world and the impacts of our work will be far-reaching.” but interpreting what that means is a complicated task. We are fortunate to have a number of good bioinformaticians and While the development of the blood test will have huge ramifications researchers who have done quite a bit of whole genome sequencing, for pregnant women, the team at Magee is hoping to develop even and who are more than willing to teach a new generation of molecular more precise screening tests. geneticists and post-docs, and physicians who are interested in this area of precision medicine.” This training and the genetics team at According to Dr. Rajkovic, “One thing that we are working on is the Magee are establishing a new standard of care for patients. ability to isolate fetal cells from the maternal circulation that will allow us to practice better precision medicine. At this time, we have to use Dr. Peters talks about another rare aspect of the environment at maternal plasma, which is good for diagnosing larger genetic Magee. “Here researchers like me have the opportunity to take abnormalities such as an extra or missing chromosome, but it’s not discovery that’s born in a laboratory environment and take it all the as good as looking at the fetus at the nucleotide level.” He adds, “Dave way through to the clinical setting. The speed at which we are able Peters really has been one of the pioneers in this area of non-invasive to conduct this bench-to-bedside method of research is very prenatal diagnosis. And it’s great to see his work and the work of his unusual. I’ve never come across that before. In my 24 years of colleagues finding clinical application here at Magee.” experience in genetics, the clinical and research worlds were quite separate. At Magee, we are literally delivering this test that we’ve THE PLACE TO BE conceived and developed and optimized through the clinicians. The Magee offers two unique centers – the Center for Advanced Fetal patients in western Pennsylvania—and beyond—will use that test, Diagnostics, which offers cutting-edge testing and result and that’s something that’s very satisfying.” interpretation, and the Center for Advanced Fetal Intervention, which provides state-of-the-art in utero procedures, from Collaborations like these at Magee are pushing the genetics frontier to new levels. “This is like no other time in genetics,” says Dr. Peters. ultrasound-guided fetal interventions to open fetal surgery. “It’s an absolute revolution. It reminds me of computer science in the 1990’s – what a discovery phase that was and how it changed our lives. At Magee, we’re in that phase with genetics now. It’s a very interesting environment to be in, in this whirlwind of development.” MAGEE :: PAGE 13 Charting the Course: How Magee’s Navigator Program Helps Patients on the Path through Treatment WHO NEEDS GENETIC TESTING Dr. Rajkovic believes that all couples can benefit. While in the past, a lot of genetic testing focused on certain ethnic groups, such as those of African ancestry for sickle cell anemia, Dr. Rajkovic recommends pre-conceptual genetic counseling for all couples. “These days, everybody is fairly mixed, and a lot of people don’t know their heritage. Offering much broader testing — that surpasses what we used to do as testing based on ethnicity — is where genetic testing is going. We basically want to offer every couple the ability to test their genome to see what they are carriers of and what they are at risk of passing on to their babies, and what is the chance that they will have a baby that is affected with a particular condition. This is something that should be offered to every couple that is considering having a child.” Dr. Rajkovic adds, “We are fortunate at Magee that we have some of the best counselors who have expertise in discussing various options for testing. They can analyze the data and answer virtually any question related to genetic testing, which helps alleviate the patient’s fears. My advice for the couple is to come to Magee and become educated about genetic testing. That really is the best way to dispel a lot of the myths, fears and concerns. They would be in great hands at Magee because of the caliber of genetic counselors that we have.” MAKING MEDICINE MORE PERSONAL THROUGH GENETIC TESTING Genetics is helping to personalize medicine. Each day discoveries in this field are shaping the care of tomorrow. Genomic sequencing can predict an individual’s ability to respond to various medications. The area is called pharmacogenetics. “This may be very useful in prescribing medications to individuals, leading to fewer allergies, adverse reactions, and more effective therapeutic dosing,” says Dr. Rajkovic. “We are just at the cusp of this personalized medicine revolution,” he states. “And, I think that the possibilities are tremendous. When individuals know what they’re at risk for or what their genome contains, it will give them great empowerment of knowing who they are, what they are, and what they should be doing to optimize their life span and their productive years. I think this will make for a healthier nation and hopefully reduce the number of terminal disease cases that could have been prevented. “Basically, personalized medicine is already here. It’s just at its beginning. We’ll see its effects in the next few decades, and it’s very important that Magee is part of that.” To make a donation to one of the most advanced genetic research institutes in the world, visit www.mwrif.org/donate. Receiving a cancer diagnosis is often a very difficult time for patients. They must make choices about treatments and medications, weigh side effects and privacy concerns, and become familiar with specialists and medical terminology. The last thing a cancer patient needs to do is worry about things like insurance, transportation, and finances. That’s where the Oncology Patient Navigation Service team at Magee-Womens Hospital of UPMC comes in. From the initial diagnosis through treatment and follow-up, Magee’s patient navigators are available to patients every step of the way. Navigators can help by connecting patients with community resources for psychological and social support, finding financial assistance programs to help them begin or continue treatment, and providing a link between the patient and their medical providers to get questions answered and information clarified. The program began in 2008 at Magee for breast cancer patients through a grant from the Susan G. Komen Foundation to support one navigator and a social worker. “The goal of the patient navigator program, from the very beginning, has been to help patients navigate through the cancer treatment process,” says Judy Herstine, program administrator, Women’s Cancer Services. “The navigators initially do an assessment with each patient to determine what barriers to care they are facing — things like work schedules, transportation, child care — and to help them find ways to overcome those challenges through community support and resources.” That guidance and support has been invaluable to patients like Bonnie, a single mother who was diagnosed in 2012 with cervical cancer. Bonnie connected right away with Rhonda Martini, an oncology patient navigator, to help address challenges she was facing as she started on her course of treatment. Bonnie was getting by with a part-time job, but it offered no health insurance, so Rhonda pointed her toward an insurance program for women with cervical cancer. Without a car, Bonnie also needed help coordinating transportation for her appointments. Rhonda provided multiple community transportation resources that successfully got Bonnie to and from every medical appointment for free. More than 1,300 patients each year, like Bonnie, benefit from the Oncology Patient Navigation Service. Patients get access to navigators in many different ways — through caregiver referrals, word-of-mouth, or automatically as part of a patient population facing unique challenges, including pre-menopausal breast cancer patients, patients who are going through breast-reconstruction surgery, radiation oncology patients, and patients who are undergoing chemotherapy prior to surgery. Navigators may meet with patients right away in their physicians’ offices or cancer center, or they will give the patient a phone call to assess their needs and arrange a meeting face to face. “Sometimes they see a patient every time they’re in. In other cases, they’ll just talk once to provide specific information for a patient who doesn’t need anything more,” Ms. Herstine explains. “But often the navigators work with these patients over the course of years. The relationship is really dependent on the patient’s need. It’s very flexible.” The Oncology Patient Navigator Service team works closely with several organizations and community resources for cancer care, including the American Cancer Society, Susan G. Komen of Pittsburgh, Our Club House, Cancer Caring Center, National Ovarian Cancer Coalition, and the Ovarian Cancer Research Foundation. Donations through Magee-Womens Research Institute & Foundation provide financial support for the Breast Cancer Patient Care Fund and the Gynecologic Cancer Patient Care Fund, which help patients who need financial assistance for transportation, overnight housing, and medications. Community support for the navigation program has been crucial. We have received support from: The American Cancer Society, Susan G. Komen Foundation, Eden Hall Foundation, Magee Volunteer Service Board, The Glimmer of Hope Foundation, and The Young Women’s Breast Cancer Awareness Foundation. “We couldn’t have done it without the support from their funding,” Ms. Herstine says. “It allowed us to branch out from just breast cancer patient navigation to the point where all women’s cancer patients at Magee have access to a patient navigator in their course of treatment. The navigator program is integral to our services, and it is a great complement to the exceptional, individualized, and compassionate care provided by our specialty physicians and staff.” To support the Oncology Patient Navigator Service, visit www.mwrif.org/donate or call 412-641-8977. MAGEE :: PAGE 14 MAGEE :: PAGE 15 How NICView Cameras Help Their Parents Keep e’s Eyes on Mage ts n Littlest Patie A Womb With a View When newborn babies gets a bumpy start in life, there is no better place for them to be than in the neonatal intensive care unit (NICU) at Magee-Womens Hospital of UPMC. The level of care from doctors, nurses, and care workers in the NICU is unparalleled. But for the new parents and families of these babies, the experience can be extremely difficult. When a baby is placed in an isolette, it can leave mothers and fathers feeling quite isolated, too. With the launch of the NICView camera system (which was introduced in the Summer 2013 issue of MAGEE) at Magee as well as in the Children’s Hospital of Pittsburgh of UPMC, parents can rest a little easier knowing that they can quickly and easily check on their little ones from anywhere, even when they’re not yet in the nursery at home. Magee and Children’s are two of only three hospitals in Pennsylvania with this innovative, password-protected webcam system installed in their NICUs, which gives parents and families a virtual connection to their newborns 24 hours a day, seven days a week. And there are plenty of people connecting. In the first six months since the NICView system was launched at Magee in March 2014, there have been 42,215 logins. Some views have come from as far away as Canada, the United Kingdom, Spain, Belgium, and Tunisia. The system averages 7,000 logins each month. “The camera is at the bedside of the babies, and we keep it on 24 hours a day, except when we’re doing hands-on care or during an emergency,” explains Suzy Guess, director, Neonatal Patient Care Services. “I’ve heard parents say that it’s the last thing they look at before they go to bed and the first thing they look at when they wake up in the morning, so it provides that comfort of seeing your baby when you can’t be there or they can’t yet be with you.” “After the shock of having our son eight weeks early and being in the NICU, we were pleasantly surprised to find that his room was equipped with a webcam that allowed us to securely log in and check up on him at any time. Even though we don’t live far from Magee, we couldn’t be there all the time, so it gave us a lot of peace of mind to be able to see him on the camera. Both sets of grandparents live in Australia, and we shared the login details with them so that they could see their new grandson. It really helped our parents who were so far away feel connected to us, and of course it made them feel connected to our son.” – Andrew Stephen, father of a Magee NICU graduate It also helps parents save precious bonding time until babies are discharged from the hospital. “It provides that comfort if moms need to go back to work, that they can save their maternity leave time while the babies are still being cared for in the NICU,” Ms. Guess says. Of the 77 beds in Magee’s NICU, 62 currently have the cameras installed, but the last sets of eyes are on their way thanks to the fundraising efforts at the 2014 Savor Pittsburgh event in August. Funds to support the initial installation of the NICView camera system at Magee were raised through the Volunteer Services Board of Magee-Womens Hospital and the 2013 Savor Pittsburgh fundraising event. To support Magee’s NICU or neonatology research at Magee-Womens Research Institute, visit www.mwrif.org/donate or call 412-641-8977. MAGEE :: PAGE 16 MAGEE :: PAGE 17 Pregnanzzzzz’s Can better sleep make for a healthier mom and baby? Ah, the benefits of a good night’s sleep. You wake up feeling refreshed, restored and ready to tackle the day. But what happens when you have a bad night’s sleep? We all know that if we don’t sleep well, we don’t feel well. But are there more serious consequences to poor sleep – particularly for pregnant women and their babies? That’s the question that keeps Francesca Facco, MD, up at night. For the last six years, Dr. Facco, a researcher at Magee-Womens Research Institute and an assistant professor, Obstetrics and Gynecology, and Maternal Fetal Specialist at the University of Pittsburgh, has been studying sleep and its impact on pregnant women and their babies. And the results may be eye-opening. Dr. Francesca Facco “I think what surprises people is that sleep is not a biologically inactive state,” says Dr. Facco. “People used to think that the only purpose of sleep was for your brain to restore itself and be able to function the next day. More and more data shows that sleep is not just something you need to do for your brain, but you need to do it for your whole body – your immune system, cardiovascular system, and metabolic system. It’s interesting from an evolutionary perspective, too. If sleep weren’t important in maintaining health, it doesn’t make a lot of evolutionary sense that you spend eight hours a night as an animal being defenseless, sleeping. Obviously there’s a strong evolutionary drive to maintain sleep, because it probably is protective from a health perspective on many different levels. I realized there was a lot of data about how sleep is important to your overall health, but that it hadn’t been looked at in pregnancy – in terms of how poor sleep or sleep disorders could affect a woman’s pregnancy.” Dr. Facco became fascinated with studying sleep and pregnancy when she served her residency and was a fellow at Northwestern University in Chicago. But growing up outside of Pittsburgh, she wanted to return to the area while still remaining in academic medicine. Fortunately, Magee provided the ideal setting to continue her research. (continued) MAGEE :: PAGE 18 MAGEE :: PAGE 19 can’t get more than six hours of sleep at night? And should we be intervening?” Those are questions Dr. Facco hopes to answer with her research, helping to inform women and their physicians. Don’t Ignore the Snore – Or Any Other Sleep Problems Sleep problems range from short sleep duration and long sleep our study group active Continuous Positive Airway Pressure (CPAP) duration to frequent snoring, sleep apnea, and conditions like treatment, or placebo CPAP treatment for their sleep apnea.” She restless leg syndrome. The possible impact of these problems is looking to see whether pregnancy outcomes are impacted by on mothers and their babies ranges from gestational diabetes, aggressively screening and treating for sleep apnea. high blood pressure in pregnancy, and preeclampsia to low infant birth weight, premature birth, and maternal A Good Night’s Sleep complications at delivery like blood loss and infection. Stating that sleep is a whole complex biological phenomenon, Dr. Facco “There’s not any great data about how much sleep a pregnant woman should get,” says Dr. Facco. “That’s what I’m trying to believes, “If sleep leads to pregnancy complications, it could understand. Outside of pregnancy there is pretty strong evidence certainly impact the fetus on different levels, too.” Since her that less than six hours a night and very long sleep durations of fellowship, Dr. Facco has done several projects studying sleep greater than nine hours a night can have a negative impact on your and pregnancy from different perspectives. Not surprisingly, metabolic health as well as your cardiovascular health.” she’s found that sleep disorders and poor sleep quality are common in pregnant women. Even more troublesome is the Old wives tales abound, warning moms-to-be about what to expect link between poor sleep and poor health outcomes. “I’ve done work with survey data that shows that women who self-reported in terms of sleep – or lack thereof. “There’s a lot of anecdotal advice and evidence that goes around for women about what to expect short sleep and frequent snoring had an increased risk of with sleep and pregnancy,” says Dr. Facco. “People say you’re not diabetes in pregnancy. I decided it was time to look objectively going to sleep well because your body is getting ready to be up with at sleep, measuring sleep and how it can impact pregnancy.” the baby. There’s not a lot of science behind that. Even as doctors, we don’t know what to tell women to aim for. What should be your New Sleep Studies overall sleep goal? What problems should you look out for? Should Dr. Facco embarked on several projects, one of which used a you tell us if you have frequent snoring? Or should you tell us if you watch that measures sleep by keeping track of the mother’s motion at night. “We did a study of more than 800 women who wore this watch, and we’re examining how the time they spend sleeping at night may impact their pregnancy health.” In another study, she used a different device that measures sleep apnea, the breathing pauses that cause oxygen desaturation at night. The study involved 3,000 pregnant women. “We are looking at that data to see how sleep apnea may impact pregnancy and health. We’re looking forward to having that data soon to report our findings.” Here at Magee, Dr. Facco is performing a study to see if screening for and treating sleep apnea in pregnancy results in a change in the health profile of obese pregnant women. “We’re going to identify, screen, diagnose, and then randomly give One thing is for certain, though: sleep is important. “We as a society have to recognize the health benefits of sleep and what sleep can impact. Right now we are a 24/7 society with constant access to media and devices,” says Facco. “We have to put forth the effort to protect sleep and make time for it just like we do for other things that are good for us like exercise.” To support our efforts to learn more about how sleep impacts pregnant women and their babies, visit www.mwrif.org/donate. Tips for a top-notch sleep • Keep work materials, computers, TVs, and smartphones out of the bedroom. • Keep regular sleep habits and times, even on weekends. • Avoid daytime napping. • Create a bedtime routine that’s relaxing, like reading a book, or listening to soothing music. • Make sure your room is dark, quiet, comfortable, and cool. • Evaluate your mattress for comfort and support. If it’s older than 7 years, it may be time for a new one. • Make sure if you exercise, you’re done at least two hours before bedtime. • Avoid nicotine and caffeine close to bedtime. • Finish eating two to three hours before you head for bed. MAGEE :: PAGE 20 HEALTHIER PREGNANCIES? THERE WILL BE AN APP FOR THAT, SOON Magee-Womens Research Institute is currently involved in yet another important and ground-breaking collaboration aimed at healthier pregnancies. Pulling together researchers from Carnegie Mellon University, community leaders from Hazelwood, and physicians from Magee, work is under way to develop a mobile app to help women have healthier pregnancies and healthier babies. And it’s all possible because of funding from The Pittsburgh Foundation. Look for more updates on this exciting initiative with our community partners in future issues of MAGEE. MAGEE :: PAGE 21 Endometrial Cancer Prevention and Obesity: Magee Epidemiologist Looks for Cancer Clues in Healthy People Dr. Faina Linkov, PhD In a country like the United States with a full-blown obesity epidemic, it should come as no surprise that the rate of a cancer that is strongly tied to obesity is growing right along with our waistlines. Over the past decade, researchers have noted an alarming increase in the incidence of endometrial cancer (or uterine cancer), the most common gynecologic cancer in the U.S. Although endometrial cancer is potentially preventable through lifestyle modifications such as weight loss, there is limited evidence that such measures in high-risk patients are beneficial. But at Magee-Womens Research Institute, Dr. Faina Linkov, PhD, MPH, associate professor, Obstetrics, Gynecology, and Reproductive Sciences and Epidemiology, along with her clinical collaborators like Robert Edwards, MD, director, Gynecologic Oncology, Magee-Womens Hospital of UPMC, aim to fill that gap in evidence. “Many women do not know that endometrial cancer is caused by obesity or that they are at increased risk of getting other obesity-related health problems,” Dr. Linkov says. “So as health care providers and scientists, we’re trying to determine the best time to share that message with high-risk patients.” She is researching the obesity/gynecologic cancer link by focusing on whether massive weight loss achieved through bariatric surgery can potentially prevent endometrial cancer and its precursors. To study the link between obesity and endometrial cancer, Dr. Linkov looks for clues known as “biomarkers” in adipose tissue (fat), endometrial tissue, and the blood of patients with endometrial cancer, as well as in high-risk, morbidly obese women who do not yet have the disease. Dr. Linkov and her collaborators have also organized patient forums and research collaborations to determine the best education and prevention methods for healthy, at-risk women as well as endometrial cancer survivors. These patient forums revealed one simple reality: weight loss is difficult. “This is especially true for those patients who are morbidly obese, as they may have much greater difficulty achieving weight loss through exercise due to increased orthopedic risk and comorbid conditions,” Dr. Linkov explains. Bariatric surgery is often a good alternative for such patients, so Dr. Linkov is currently working with the bariatric surgery clinic at Magee-Womens Hospital to evaluate whether weight loss associated with bariatric surgery may provide an effective way for the prevention of endometrial cancer and other obesity-associated endometrial pathologies. Dr. Linkov’s ground-breaking research suggests that morbidly obese women – those with a body mass index (BMI) over 35 – who undergo intentional weight loss through lifestyle modifications and/or bariatric surgery, experience changes in blood and tissue biomarkers associated with cancer development. These findings – based on Dr. Linkov’s collaboration with Dr. Lora Burke (University of Pittsburgh School of Nursing). Dr. Dana Bovbjerg (Biobehavioral Oncology Program, University of Pittsburgh Cancer Institute), Peter Argenta (University of Minnesota), and a team of local researchers – were recently published in a special issue of Gynecologic Oncology specifically dedicated to obesity. One of the most rewarding research projects of Dr. Linkov’s career has been evaluating the endometrium (uterine lining) of morbidly obese, bariatric surgery candidates. “Frighteningly, 20 percent of the women we studied had some kind of pathology in the endometrium, including precancerous lesions, that they didn’t know anything about,” Dr. Linkov explains. “I think it’s a very important discovery because, at this point, we do not screen for endometrial cancer. However, screening may prove important for morbidly obese women if more in-depth investigations confirm our preliminary data. I think that our research, conducted with the help of gynecologic oncologists and pathologists, may support that need.” MAGEE :: PAGE 22 This focus on screening and preventive measures is driving the latest direction of Dr. Linkov’s research into the search for a biomarker panel that could point to an increased risk for endometrial cancer development. Additionally, Dr. Linkov is pioneering the investigation of stem cells in adipose (fat) tissue to serve as such biomarkers, believing that adipose tissue might offer more clues for detection than traditional blood- or tissue-based markers. Trying to encourage prevention through weight loss and lifestyle changes requires more than a strong body of clinical research, so Dr. Linkov works in collaboration with the University of Pittsburgh Cancer Institute, international cancer researchers, and patient stakeholders to develop better patient-centered approaches. “A lot of patients diagnosed with obesity related cancers don’t get lifestyle advice when they’re diagnosed,” she reveals. “At the time of cancer diagnosis, most women probably don’t want to hear that they need to lose some weight. But patients said that there’s a point in cancer care when they are done with surgery, chemotherapy, and radiation, and are extremely motivated to become healthier. Therein lies our ‘teachable moment’ for introduction of weight loss interventions, because most endometrial cancer patients don’t die from the disease, they die from obesity-related complications.” By 2030 research indicates that the U.S. could see a sharp increase in the rate of endometrial cancer incidence, which could rise by 55 percent even if the current rates of obesity remain the same. MAGEE :: PAGE 23 Cancer Care Bags Offer Comfort to Patients According to Mahatma Gandhi, “The best way to find yourself is to lose yourself in the service of others.” At Magee, we understand the value of those who are dedicated to service projects that benefit our patients and the positive impact they make. A number of volunteers have seen a particular need in the area of cancer treatment, and have worked hard to help ease the discomfort of chemotherapy. These service projects are a true labor of love, and ultimately impact not only the patients, but also the donors. “When my mother went through chemotherapy a few years ago, I noticed that even the smallest things other people did for her brought her happiness,” said Abbi Yachini. When it was time for Abbi to select a project to complete in order to graduate with honors from Brooke High School in West Virginia, she remembered this, and she knew just what she wanted to do. Her mother, Christie, received chemotherapy nearly three years ago. After watching her endure the harsh side effects of the drugs, Abbi wanted to do something that would have a positive impact on the patients and allow her to give back to Magee-Womens Hospital of UPMC after the excellent care they had provided and still continue to provide, to her mother. She decided to make and donate Cancer Care Bags to women who are undergoing chemotherapy at Magee. These bags contain items intended to provide comfort and support to patients, often including things like tissues, fuzzy socks, hats, scarves, and crossword puzzle books. , . -Abbi Yachini “I thought by giving these bags to patients, I could put a smile on their face. Chemo patients need to be showered in positivity, and I believe just knowing someone wants to help will brighten their spirits,” said Abbi. She first set up a page on GoFundMe.com, and then linked it to her Facebook page. Abbi received donations immediately, and as her friends shared the link, they quickly spread the word. She also hosted a Princess Party at her house, where girls could come for crafts, nail art, and cupcake designing in exchange for a donation. Altogether, Abbi raised more than $800 and was able to assemble 100 bags over the summer. She also hand decorated each bag to add a personal touch, and now delivers about a dozen bags each week. Although she has met her original goal, Abbi plans to continue the project as long as possible. Anyone interested in contributing can visit her at http://www.gofundme.com/9m0w3s. “It’s amazing how so many people came together to help make cancer patients smile. I am beyond thankful to everyone who donated to my project, as I could not have gone nearly as far in assembling the bags without the incredible support I have received,” she said. Abbi isn’t the only student working hard to support patients at Magee. The Girls’ Athletic Association (GAA) at the Western PA School for the Deaf also created and delivered Cancer Care Bags for their annual service project last year. The group has a long history of service for raising awareness about breast cancer, and to those who are fighting their own battles. In past years, they sold T-shirts and other items to make donations toward Susan G. Komen Foundation, and participated in Lee National Denim Days, said Erin McNeil-Mascaro, GAA advisor and teacher at the Western PA School for the Deaf. Other years they took up collections to do something special for school staff members who had been affected in some way by breast cancer. “Every year, we try to do something to help breast cancer awareness, but also to do something that lets the kids really see personally where their work goes,” Erin said. Last year, the girls chose to make Cancer Care Bags, and were able to get the entire school involved. Not only did they collect enough items to make almost 70 bags, they also worked with the home economics teacher in their spare time to make scarves and caps for the patients. “I think it had a good impact on the girls,” Erin said. “One of the girls had lost her mom a few years ago to breast cancer. I could see that she was really motivated to help, and it seemed to be healing for her. She was a big leader in getting the project moving.” The girls assembled the bags, but the project didn’t end there. (continued) MAGEE :: PAGE 24 MAGEE :: PAGE 25 GENEROSITY IN ACTION Lacing Up for Cancer Research Erin interpreted for her students as they signed in American Sign Language and presented each woman with a care bag. They said, “Stay strong. You are beautiful.” They may have hung up their skates, but members of the Penguins Alumni Foundation are still skating toward an important goal—to cure breast cancer. For the past few years, the Pittsburgh Penguin Alumni Foundation has teamed up to generously support the efforts of Magee-Womens Research Institute & Foundation. The group holds two charity events—the Penguins Alumni Charity Golf Classic and Skate With The Greats—which directly benefit breast cancer research at Magee. “The kindness and compassion of my students is always inspiring to me, but it’s moments like this when I am truly proud and awed by them,” Erin said. This remarkable group of students received several thank you cards. One card said, “It was so heartfelt, I wept. I want you all to know how much that meant to me.” . -Erin McNeil-Mascaro “I like to share those with the girls to show them how their service to the community really does have an impact,” Erin said. “The girls really feel like they are making a difference. I want this to spread throughout their lives after they leave here, for them to continue making a difference.” The group, which includes about 10 girls from across Pennsylvania, is planning to repeat the project again this year. “They came in asking about it at the start of the school year, and they are already excited about it,” Erin said. Anyone wanting to contribute toward this year’s project can contact Erin through www.wpsd.org. For more information about how you can make a difference in the lives of those who are fighting cancer, please call the Magee-Womens Research Institute & Foundation at 412-641-8977. The goal to find a cure is near and dear to the alumni. “Throughout the years, a number of players’ wives and family members have been affected by breast cancer,” said Heather Hillier, wife of former Penguins player and coach, Randy Hillier. Randy lost his mother and grandmother to breast cancer, and Heather and her sister were both diagnosed with the disease within the same year. The alumni also lost Nicole Meloche, wife of former Penguins player and coach Giles Meloche, to inflammatory breast cancer in 1993 at the age of 42. The connection between the Alumni Foundation and Magee-Womens Research Institute stems from Heather’s personal battle with breast cancer and the alumni’s willingness to support the cause. According to Heather, the Pittsburgh Penguin Foundation also has been an integral partpart of the fundraising efforts. SheShe offered particular gratitude toward Foundation president, David Soltesz andand Cindy Himes, director integral of the fundraising efforts. offered particular gratitude toward Foundation president, David Soltesz Cindy Himes, of Community and Alumni Having been treated Mageeatand knowing other alumni who havewho benefi tted fromted care at care director of Community andRelations. Alumni Relations. Having beenat treated Magee and knowing otherwives alumni wives have benefi from Magee, Heather knew Magee would bebe a perfect partner to help tackle this devastating disease. at Magee, Heather knew Magee would a perfect partner to help tackle this devastating disease. After touring the Women’s Cancer Research Center at Magee-Womens Research Institute with members of the alumni group, including Rick Tocchet, Jay Caufield, Dave Hannan, and Kim Clakson and meeting the center’s co-director, Dr. Adrian Lee and director of Education, Dr. Steffi Oesterreich, Heather and Randy were inspired to do whatever they could to help raise money for research. From there, they met with the Alumni Foundation and the Pittsburgh Penguins Foundation, and both organizations were enthusiastic about supporting the efforts underway under wayat atMagee. Magee. “Thealumni alumniliterally literallyput puton ontheir theirjerseys jerseysand andskates skatestotoraise raisemoney moneyfor forbreast breastcancer cancerresearch,” research,”Heather Heathersaid. said.“You “Youjust justhave havetotoask askthem, them, “The and they are there. They’ve been amazing!” The Charity Golf Classic has been held for 17 years, and has supported Magee for the last four years. Those in attendance have the opportunity to join alumni members for a fun day playing golf, reminiscing about Penguins history, and raising funds for charity. Skate WithWith The The Greats began threethree years ago,ago, benefi ttingting Magee from the the beginning. ThisThis event gives Penguin and raising funds for charity. Skate Greats began years benefi Magee from beginning. event gives Penguin fans the chance to skate with popular alumni, gathering autographs, photos, and memories. Over the years, the two events have generated more than $67,000 for breast cancer research. “Weare arecurrently currentlyworking workingon onadditional additionalprograms programstotohelp helpraise raise$100,000. more money. proud the contributions to date “We We’reWe’re reallyreally proud of theofcontributions we’vewe’ve mademade to date and are and areto excited to continue to raise to support the advancement breastresearch,” cancer research,” excited continue to raise funds tofunds support the advancement of breastofcancer HeatherHeather said. said. Opportunities to Help are Limitless If you are interested in hosting your own event to support patients at Magee, call 412-641-8977. Some examples of events include: “Thealumni Alumni committed supporting cancer research,” Heather said. “We know that breast cancer treatable, survivable disease, “The isis committed toto supporting cancer research,” Heather said. “We know that breast cancer isis aa treatable, survivable disease, and we hope to be a part of finding that cure.” To make a gift to support women’s cancer research, visit www.mwrif.org/donate. • Fashion shows • Contests such as talent shows or cooking bake-offs • Benefit concerts with school chorus and jazz bands • Live or silent auctions • Craft shows FPO • Super Bowl parties • Monte Carlo nights Visit the Penguins Alumni Foundation at http://pittsburghpenguinsfoundation.org for more information. MAGEE :: PAGE 26 Plans are under way for next year’s Skate With The Greats. Please plan to join Randy and Heather Hillier and otherPlans members of theway Penguins alumni, Billy are under for next year’s including Skate With The Guerin, Kim and Donna Bryanand andHeather Jen Trottier, Greats. Please planClakson, to join Randy Hillier and Peterother Taglienetti and Dr. Vonda Wright,alumni, Mark Recchi, members of the Penguins including Billy Jay Caufi eld, Kim Ken and Donna Cindy Wregget, Edand andJen Diane Guerin, Clakson, and Bryan Trottier, Johnston an evening of Dr. family funWright, in support of Recchi, breast Peterfor Taglienetti and Vonda Mark cancer research atKen Magee. Jay Caufield, and Cindy Wregget, and Ed and Diane Johnston for an evening of family fun in support of breast cancer research at Magee. Visit the Penguins Alumni Foundation at http://pittsburghpenguinsfoundation.org for more information. MAGEE :: PAGE 27 GENEROSITY IN ACTION Thirty-five Years of Gratitude for Exceptional NICU Care Thirty-five years after the birth of his son, Dick Diamondstone still remembers the pain he felt when the doctor came out of the delivery room at a Greensburg hospital and said, “Your wife is fine but there is no chance of survival for your baby.” After dropping the devastating news, the physician walked away before Dick could ask any questions. Dick’s wife, Karen, had been admitted two days earlier after her water broke three months prematurely. Grieving, Dick followed the incubator as the nurse rolled his tiny son down the hall to the nursery. Measuring 12 ½ inches and weighing only 1 pound, 15 ounces, Jordan was wrapped in aluminum foil and placed under a lamp to keep him warm but no other measures were taken to save his life. Dick recalls watching his newborn son kicking and squirming in his bassinet and thinking to himself, “He is strong and he’s going to make it!” Returning to his wife’s bedside, Dick tried to reassure her that Jordan would live. A few hours later, a pediatrician advised the couple to transfer Jordan to Magee-Womens Hospital immediately, where he would receive the advanced care he needed to survive. For the first day and a half, Jordan breathed on his own before complications set in. His immature lungs made it extremely difficult for him to breathe and his heart stopped many times over his stay in the Neonatal Intensive Care Unit (NICU). Over the next few weeks, the couple prayed hard as Jordan fought for his life. Each day, under the expert care at Magee, Jordan grew stronger and the Diamondstones grew hopeful that their precious child would beat the odds and soon be coming home. During Jordan’s three-month stay in the Magee NICU, Dick and Karen visited every day to feed him and hold him. Dick recalls that the nurses and doctors caring for Jordan loved him, bonded with him, and bought him many presents. Once when the Diamondstones arrived, they were surprised to find Jordan dressed in a doll-sized Pittsburgh Steelers’ outfit in celebration of the Steelers making it into the playoffs. Eight long weeks after Jordan’s birth, the Diamondstones received exciting news — Jordan could go home as soon as he could make it 10 days without any breathing problems. The couple began counting down the days until they could take their baby home. Every day they would think just a few more days, only to be disappointed when an episode of breathing difficulties would set Jordan back and the countdown would begin again. But each time he made it a little further and after three months and one day — just one day past MAGEE :: PAGE 28 his original due date — it was time to take Jordan home. “The staff told us that Jordan was the youngest baby [at that time] they had ever cared for at Magee who survived with excellent health. Everyone at Magee was wonderful to Jordan,” Karen and Dick recall. “The care he received was outstanding. It set him on a path to a wonderful life.” In appreciation for the excellent and compassionate care Jordan received, the Diamondstones made a financial gift to the Magee NICU and at Jordan’s first birthday, Dick crafted a special memento for each member of Jordan’s care team — based on the iconic pop art LOVE emblem — which he cut from a one-inch steel plate and then had it chromed and engraved with Jordan’s name and birthday. The gifts were accompanied by a letter, penned from Jordan’s perspective, detailing his remarkable one-year journey to health. Years later, Jordan and his parents stopped by the office of the pediatrician who managed Jordan’s care at Magee. On his desk was the LOVE emblem given to him to commemorate Jordan’s birth. Dick still carries a copy of the letter as a daily reminder of the remarkable care Jordan received at Magee. He and Karen also make an annual gift to Magee’s NICU in honor of Jordan’s birthday to support the innovative work being done there to save babies like Jordan. Today Jordan is a healthy, happy 35-year-old with many friends and a good career. “Jordan is the happiest, most optimistic person I have ever known,” says Dick. “Karen and I, and his brother Mike, will always be eternally grateful to Magee for giving us an opportunity to watch this beautiful young man grow.” To make a gift to support Magee’s NICU, visit www.mwrif.org/donate. MAGEE :: PAGE 29 GENEROSITY IN ACTION Mile After Mile, Joe Scarpaci Rides to Help Breast Cancer Patients To many people, biking 613 miles over mountain trails from Blacksburg, VA to Pittsburgh, PA would seem to be a journey too difficult to complete, but Joe Scarpaci, Jr. knows the journey a woman diagnosed with breast cancer must take is a much more difficult one. Joe’s own beloved mother, Josie Cicero Scarpaci, battled breast cancer for seven years before succumbing to the disease in the summer of 1998 at the age of 64. His mother’s battle is what inspired the 59-year-old executive director of the Center for the Study of Cuban Culture and the Economy to bike to Pittsburgh every summer for the past five years to raise breast cancer awareness and much-needed funds to help breast cancer patients at Magee-Womens Hospital of UPMC in the fight for their lives. “I hung my hopes on the magical five-year mark — which she reached — as well as the powers of Tamoxifen,” Joe says. “We know now that breast cancer is way more complex and the treatment strategies adjust every year as researchers’ knowledge about the disease increases.” Joe’s sister, Darlene Violetta, remembers her mother’s determination to beat the disease. “She never complained; she was always optimistic. But she worried about us kids and our father. She was a wonderful mother and wife and a mentor to many young women in Pittsburgh. We lost her way, way too soon.” “Josie was an amazing woman, full of energy,” Joe’s wife Gilda recalls. “She never gave up. Just three weeks before her death, Josie attended a ceremony at Mt. Lebanon High School to accept the Distinguished Alumni Award on Joe’s behalf while he was out of the country.” Each year, more than 1,300 women and men are treated at Magee for breast cancer. To help ease the cancer journey for these patients, Joe, his father Joseph, and his siblings — Darlene, Josette, and Sam — created the Josie Scarpaci Breast Health Access Fund at Magee. “We felt it would be a wonderful way to memorialize our mother and honor the clinicians and nurses who cared for her at Magee,” says Darlene. Through Joe’s bike rides, memorial contributions and proceeds from the sale of original artwork notecards, Joe and his extended family have raised more than $57,600 for the Scarpaci Fund. As Joe peddles along trails and through towns, he talks to the people he encounters about his mother’s battle with cancer, the wonderful care she received from her medical team at Magee, and what he and his family are doing to help women like her. In honor of Josie, the Scarpaci family also donated “My Satin Doll,” a series of four acrylics that hang in the cancer center to help bring comfort to patients. Joe is grateful for the support of friends, colleagues, and even strangers he has met along his way. Once, while stopping at a garage sale in Mint Spring, VA to rest, Joe struck up a conversation with the homeowner. “When I told her I was riding for Magee,” Joe recalls, “She immediately handed me all of the change she had taken in that morning, explaining that she was a nurse who had worked at Magee years before in the early 1960s. At that time, Magee was one of the few hospitals in the country hiring AfricanAmerican nurses and she was touched by that.” Another time Joe chatted with a couple who was dining in the restaurant where he had stopped to have dinner. Learning the purpose for his ride, the woman thanked him and made a gift, sharing that she was a breast cancer survivor. Through the meaningful gifts of donors who support Joe’s ride, and those of other compassionate individuals, Magee is changing lives in Pittsburgh and around the world. From advanced care to ground-breaking research, Magee offers hope and healing for women and men facing breast cancer. To make a gift to support the Josie Scarpaci Health Access Fund, visit www.mwrif.org/donate. Through their efforts, Magee has developed comprehensive resource binders containing educational materials and resources for newly diagnosed breast cancer patients. The binders include information about treatment options, procedures, and medical terms and provide space for the patient to take notes about her treatment and keep track of important details to improve her outcome and provide the support each patient needs to regain their health. In honor of Josie, the Scarpaci family also donated “My Satin Doll,” a series of four acrylics that hang in the cancer center to help bring comfort to patients This year, Joe arrived in Pittsburgh after an eight-day ride, just minutes before a severe thunderstorm rolled through the city. As he stretched the kinks out of his back, he shared what goes through his mind as the miles loom ahead. “As I ride along the trail, “Joe says, “I think about all of the women facing breast cancer and it keeps me going. I hope someday that all women will survive this terrible disease and that their lives will not be diminished from having it.” MAGEE :: PAGE 30 MAGEE :: PAGE 31 NOTEWORTHY Magee Hosts Russian Physicians to Study Women’s Health In August, Magee-Womens Hospital of UPMC, in collaboration with four local insurance companies and the Allegheny County Office of Behavioral Health, launched a comprehensive Pregnancy Recovery Center to provide concurrent treatment for opiate dependence and prenatal care and delivery. The program, which is one of the first in the country, aims to offer comprehensive care for women suffering from opiate addiction by providing medical support to prevent withdrawal during pregnancy, minimizing fetal exposure to illicit substances, and engaging the mother as a leader in her recovery. “For more than a decade, Magee has offered drug recovery assistance for pregnant women,” says Dr. Dennis English, vice president of Medical Affairs at Magee. “The key difference between this program and our more traditional methadone program is the Pregnancy Recovery Center operates from the outset of pregnancy on an outpatient basis. The Pregnancy Recovery Center also will provide consistent, collaborative care throughout the patient’s pregnancy.” For more information about the program, call 412-641-1211. Magee Saddened by the Loss of Two Physicians The Magee community was saddened by the sudden loss of Dr. Morris Turner, who passed away on June 30. During his career, Dr. Turner served as medical director of the Magee-Womens outreach sites at Wilkinsburg and Monroeville; medical director for Adagio Health; and chief of service for Obstetrics and Gynecology at McKeesport Hospital. Dr. Turner, who graduated from Magee’s residency program in 1976, will be remembered as a remarkable physician who devoted his career to eliminating health disparities. Magee also mourns the loss of Dr. Leroy Indorato, who passed away on Oct. 26 following a brief illness. An active member of the Pediatrics Department at Magee-Womens Hospital since 1971, Dr. Indorato left an indelible imprint on pediatric care at Magee. He will be remembered for his clinical prowess, diligence, his warmth, and his compassion. A delegation of five Russian obstetrics gynecologists visited Magee in May for a comprehensive program exploring advanced care practices and scientific research in an array of women’s health issues. Members of the delegation shadowed physicians and nurses in Magee’s neonatal intensive care unit (NICU), birth center, and breast imaging center and spent time in the Research Institute’s laboratories observing research projects and technology in women’s cancer, fertility, reproductive biology, and uterine prolapse. The delegation was hosted by Magee Womancare International, a non-profit organization that serves as the international humanitarian outreach arm of Magee. Magee in the National Spotlight While Magee is characteristically in the national spotlight because of its high quality care and cutting-edge research, this summer Magee enjoyed national media attention for our very own singing doctor – Dr. Carey Andrew-Jaja. Dr. Andrew-Jaja, who has delivered thousands and thousands of babies throughout his career, was recognized for welcoming each baby he delivers into the world with a beautiful song. From “Happy Birthday,” to “It’s a Wonderful World,” Dr. Andrew-Jaja inherited the tradition from his mentor and says he delights in the special bond he creates with each and every one of the babies he delivers. You can watch Dr. Andrew-Jaja’s video online at http://www.youtube.com/watch?v=NBrhF77Hqag. 2014 Philanthropy Report Now Available Magee-Womens Research Institute & Foundation is grateful to our donors who fuel our research and enhance patient care and education. Your investment enables research that directly affects patient care today and contributes to a growing body of knowledge that will create healthier tomorrows in Pittsburgh and beyond. Millions of women, infants, and men will benefit from your partnership with us. To read our 2014 Philanthropy Report, visit www.mwrif.org. HAPPENINGS MWRI MORSELS April 11 June 7 Magee-Womens LiveWell Cancer Survivorship “Health and Wellness Workshop” Where: Doubletree by Hilton – Greentree When: 9 a.m. to 2 p.m. www.mwrif.org Annual NICU Reunion Where: Pittsburgh Zoo & PPG Aquarium, Pittsburgh, PA When: 11:30 a.m. Proceeds benefit the neonatal intensive care unit at Magee May 16 June 22 and 23 Aiden J. Strack Golf Classic Where: Indian Springs Golf Course, Indiana, PA Proceeds benefit families of premature infants www.aidengolf.com 7th Annual Noah Angelici Memorial Golf Outing Where: Mystic Rock at Nemacolin Woodlands Resort, Farmington, PA Proceeds benefit the Fetal Diagnosis and Treatment Center at Magee www.noahshouseofhope.com On Aug. 21 more than 1500 people gathered to support Magee’s fight to end premature births at Savor Pittsburgh at Stage AE on the North Shore. Susan Farabaugh, PhD, received a three-year, $300,000 grant from the U.S. Department of Defense’s Congressionally Directed Medical Research Program in Breast Cancer. The grant, “Oncogene Induced Changes in Mammary Cell Fate and EMT in Breast Tumorigensis,” will investigate the role of insulin-like growth factor receptors in altering mammary lineage cell fate during breast tumorigensis. Ian McGowan, MD, PhD, and colleagues from Magee-Womens Research Institute, and the University of Pittsburgh and Johns Hopkins are collaborating on a five-year, $1.9 million U19 grant entitled, “Delivery of Rectal Enema as Microbicide (DREAM).” More than 30 dishes were prepared by 21 restaurants to compete for the title “Dish of the Year.” Mothers of graduates of Magee’s Neonatal Intensive Care Unit (NICU) show off a NICU diaper, illustrating how tiny many of the babies cared for in the NICU are at birth. Lisa Rohan, PhD, Ian McGowan, MD, PhD, and colleagues, received a five-year, $3.5 million grant from NIAID, as part of U19 grant from NIAID with a group of researchers from the University of Louisville. The project is called “Griffithsinbased rectal microbicides for prevention of viral entry (PREVENT). Rebecca Watters, PhD, received a three-year, $300,000 grant from the U.S. Department of Defense’s Congressionally Directed Medical Research Program in Breast Cancer. The grant, “The Role of SRC-1 in Selectively Promoting Bone Metastases,” will study the role of the estrogen receptor co-activators in the development of bone metastases from breast cancer. Judy Yanowitz, PhD, received an undergraduate diversity supplement for one year of training to support a minority trainee. Interested in Participating in a Clinical Trial? Clinical trials would not be possible without individuals who generously volunteer their time to participate or without individuals who give generously to make these life-changing studies possible. We welcome your involvement in this important work through participation in a clinical trial. Following are a few of the studies actively recruiting participants. For a complete list of clinical trials, visit http://www.clinicalresearch.pitt.edu/SPP/Studies. Jason and Madeline Strack, and their son Jason, presented staff of Magee’s Neonatal Intensive Care Unit (NICU) with $4,000 on behalf of the Strack Foundation. Each year, the Strack Foundation hosts the Aiden J. Strack Golf Classic in memory of Jason and Madeline’s son, Aiden. Proceeds from the event support families of premature infants by funding expenses not covered by insurance, including travel and lodging. Participants at Magee-Womens Research Institute’s 3rd annual Fly Fishing Classic proudly display their fly fishing awards. Held at HomeWaters Club every September, the Fly Fishing Classic raises funds to support women’s cancers through Magee’s Women’s Cancer Research Center. To date, more than $200,000 has been raised. For more information, visit www.mwrif.org or call 412-641-8977. For sponsorship opportunities, call Denise Wickline at 412-641-8911. Validity: Recruiting for women who have been diagnosed with a cancer other than basal cell carcinoma, squamous cell carcinoma, or cervical intraepithelial neoplasia after the age of 18 and who speak fluent English to participate in a study to understand how women with cancer stand up for themselves. Participants will be asked to complete a survey about their beliefs and behaviors as a cancer survivor. The survey will take 30 to 45 minutes to complete either online or in the mail and participants will receive a $10 Amazon gift card for their time. To learn more, call 412-624-4101. Effects of Surgical Treatment Enhanced with Exercise for Mixed Urinary Incontinence (ESTEEM): Recruiting women over the age of 21 who leak urine with coughing, sneezing, or exercise for a study looking at better ways to treat urinary leakage and are interested in having surgery to correct urinary leakage, although other exclusions may apply. All participants will undergo a mid-urethral sling surgery, and may also be assigned to attend pelvic floor physical therapy before and after surgery. Participation lasts one year from the time of surgery, and involves in-person visits at the Women’s Center for Bladder and Pelvic Health at Magee-Womens Hospital of UPMC. Women who enroll in the study will be compensated up to $350 for their time. To learn more, call 412-641-2634. Longitudinal Eating Assessment in Pregnancy (LEAP): Recruiting pregnant women over the age of 13, who are currently pregnant with one baby and are planning to deliver at Magee-Womens Hospital of UPMC to participate in research to study the relationship between weight gain during pregnancy and psychological factors. This research study conducted by the Department of Psychiatry at UPMC and involves questionnaires and interviews that will take place at your doctor’s office or our office at UPMC and by telephone. Participants will receive up to $310 for completing all of the study requirements over a period of about one year. To learn more, call 412-647-5370. MAGEE :: PAGE 35 3339 Ward Street Pittsburgh, PA 15213 www.MWRIF.org 412.641.8977 Address Service Requested Making a planned gift is simple and doesn’t have to cost you anything today. 1 Remember Magee through your will. 2 Name Magee as a beneficiary on a retirement account. 3 Create an income stream for your life while also making a gift to Magee. There are many gift options to choose from including bequests, gifts of real estate, and gifts of stock. For more information about making a meaningful gift to Magee, please contact Aruthur Scully at [email protected] or 412.641.8973. NONPROFIT ORG U.S. POSTAGE PAID PITTSBURGH, PA PERMIT NO. 1212