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SPRING 2011 R E S E A R C H E R S H U N T FO R T H E G E N E TI C R O OTS

OF A CATASTROPHIC DISEASE


Diving Deep to Find Evolution’s Toolbox By Rob Mitchum

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ver billions of years of evolution, an astonishing diversity of life has been created. But one of evolution’s best tricks is to recycle old tools to produce vastly different species, from fish to insects to humans. The search for these shared developmental programs has led scientists far back in the evolutionary tree, seeking the genes in evolution’s toolbox. For J. Andrew Gillis, PhD ’09, the hunt led him to dive into murky, shark-infested Australian waters. The treasures of Gillis’ SCUBA expeditions were the eggs of the elephant fish, a member of an obscure family of fish called holocephalans. Anatomical differences between these ancient fish and their equally ancient relatives, sharks, have made them a desirable target for evolutionary biologists seeking to study how appendages first evolved. But those research dreams had gone unfulfilled, thanks to the inconvenient place where holocephalans lay their eggs. “It’s not like you can buy them at a store; it’s not like you can breed them easily in a lab,” said Gillis’ adviser, Neil Shubin, PhD, the Robert R. Bensley Professor of Organismal Biology and Anatomy at the University of Chicago. “They breed on the bottom of the ocean, so you have to find places where the eggs are accessible.” Gillis found those locations by talking to local fishermen and marine biologists in Australia and New Zealand, who steered him toward likely sites for finding elephant fish eggs. But collecting enough eggs to bring back to the laboratory wasn’t easy. “Diving for elephant fish eggs was not always a pleasure trip,” said Gillis, now a postdoctoral researcher at the University of Cambridge, in England. “Unfortunately, elephant fish like to lay their eggs in cold,

muddy, shark-infested bays. When you finally find a few eggs in the muck, it feels like winning the lottery.” After Gillis returned to the more controlled environment of the laboratory, he ran genetic experiments on the embryos of elephant fish and a type of shark called the dogfish, testing for the expression of a gene called sonic hedgehog (Shh). While the embryos of both species expressed Shh during development, when and where the gene was expressed reflected eventual anatomical differences in appendages called branchial arches. “The research highlights how evolution is extremely efficient, taking advantage of preexisting mechanisms, rather than inventing new ones,” Gillis said. “By simply tinkering with the timing of when or where a gene is expressed in an embryo, you can get very different anatomical outcomes in adults.” The study, published in January in the Proceedings of the National Academy of Sciences, also loops the obscure holocephalans into the broader story of how species separated by hundreds of millions of years of evolution can share the same evolutionary tools. Shh was originally discovered controlling body development in the fruit fly Drosophila melanogaster, and has since been found to control limb growth in everything from whales to chickens to humans. “You have a common nail that’s used for many different pieces of furniture,” Shubin said. “This esoteric fish with this esoteric anatomical system is showing us something very fundamental about the evolutionary tree: that there’s a common process at work among disparate types of organisms.”

Computer graphic showing a part of the molecule of human insulin. A single insulin molecule is made up of two chains of amino acids, the A and B chains, which are held together by disulphide bridges. Here, a detail of the B chain is seen. Atoms are spherical and color-coded: carbon (green), oxygen (gold), hydrogen (lavender). Atomic bonds drawn as lines show the skeleton of this part of the molecule. Insulin is a hormone which is produced in the pancreas by cells of the islets of Langerhans. Its function is to regulate blood sugar levels. Insuffi cient production of insulin leads to an accumulation of glucose in the blood, causing diabetes mellitus. Photo ©Alfred Pasieka/Photo Researchers

ON THE COVER

BELOW An elephant fish embryo, several weeks into development, has been removed from its hard eggshell and is being reared in a petri dish where it can be observed. The embryo sits atop a large yolk. Normally in the eggshell, the embryo would feed off the yolk for 7 to 10 months, growing up to 6 inches before hatching. The embryos can remain in the petri dish until they are ready to hatch. Photo by J. Andrew Gillis


CONTENTS FE ATU R E S 6

S P E C I A L F E AT U R E O N D E CO D I N G D I A B E T E S Discovery of certain faulty genes has allowed physicians to cure some patients who had been incorrectly diagnosed, leading to recognition of a new type of diabetes and a path for understanding the significant role genetics plays in those who develop diabetes.

by Jennifer Martin 9

Kenneth Polonsky, MD: University of Chicago Leader and Diabetes Researcher Kenneth Polonsky, MD, takes the helm of the Medical Center, Pritzker School of Medicine and the Division of Biological Sciences. by Jennifer Martin

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Research Paves Way for New Treatments Medical Center researchers work to develop novel therapeutic approaches to treat or prevent diabetes. by Jennifer Martin

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When a Virus Doesn’t Just Cause a Cold A virus may be responsible for one patient’s diabetes. by Jennifer Martin

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Community Education Empowers Diabetes Patients Several of the Medical Center’s community programs target kids whose parents have diabetes. by Kadesha Thomas

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A Giant Leap An orthopaedic surgeon fights against the standard of care to save a patient’s leg and, in the course, devises a knee implant that helps 15,000 patients. by Barbara Rose

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Without an Incision Minimally invasive technology allows physicians to map patients’ lungs, detect tumors and take bronchial biopsies without ever using a scalpel. by Mary Beth Sammons and

Cheryl L. Reed

D EPARTM ENTS 2

Letter from the Editor Meet a family from Alaska whose young son became one of the first patients to receive treatment for monogenic diabetes. Learn about a new drug, developed and tested by neurologists at the Medical Center, that replaces regular injections for certain patients with multiple sclerosis. by Cheryl L. Reed

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Midway News Catch up on the latest research and news in medicine and the biological sciences, including the appointment of new Medical Center President Sharon O’Keefe.

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S P E C I A L F E AT U R E O N M E D I C I N E O F F T H E M I DWAY 22 For the Global Good Every year, hundreds of staff and faculty at the Medical Center donate their time and talent to travel overseas and perform volunteer medicine. Their volunteerism changes their lives as much as it has changed those of their patients. by Cheryl L. Reed 29 Learning to “Dig” the Sciences A nonprofit organization on campus inspires urban high schoolers to explore their inner scientists. by Brooke O’Neill 30 Feeling Like a Kid Children with neurological disorders get a chance to act like kids at a special camp sponsored by the Medical Center’s chief neurosurgeon. by Brooke O’Neill

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Pritzker Profile: From Film School to Med School A fourth-year student combines her film expertise with her medical interests to film a documentary about people with severe and persistent mental illness. by Shane Graber

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Class Notes Read about students and alumni of the Pritzker School of Medicine and the Division of Biological Sciences.

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Perspective: My Father’s Life with Cancer A geriatric oncologist learns end-of-life lessons while caring for his dying father.

by William Dale, MD, PhD


L E T T E R F R O M T H E E D I TO R

Talking Directly to Researchers t’s not often that patients have an opportunity to talk directly to the researchers who have cured their disease. But that’s what happened last summer, when a unique symposium in Chicago brought together families, physicians and genetic researchers to discuss a rare form of diabetes. The first Monogenic Diabetes Forum was held downtown in July 2010 to connect dozens of families who have been affected by this disease. For those parents and their young children, everyday life changed dramatically with the discovery of a single gene defect that causes monogenic diabetes. University of Chicago Medical Center researchers and physicians were on hand to discuss the clinical, biomedical and genetic advances that have allowed physicians to diagnose and treat this form of diabetes with a pill. Previously, these young patients were kept alive only by round-the-clock insulin injections. Following that weekend conference, I met Cameron Lundfelt, who had just turned 6 years old, and his parents, Alissa and Geoff, on campus. They were basking in the sun outside the bookstore while Cameron raced between benches. They’d traveled all the way from Alaska, where there is no pediatric endocrinologist. For them, it was comforting to be among other families who understand their circumstances. This form of diabetes is so rare that physicians elsewhere had told them they were “misinformed” about their son’s condition. It was only three years earlier that the Lundfelts had come across an article about Lilly Jaffe, a 6-year-old girl diagnosed with neonatal monogenic diabetes, caused by the same gene mutation Cameron had. The Lundfelts sent an e-mail across four time zones. Thirty minutes later, the phone rang. It was Louis Philipson, MD, PhD, director of the Kovler Diabetes Center, the same physician who had treated Lilly Jaffe and made her free of insulin shots. A month later, the Lundfelts arrived at the Medical Center, where Philipson and his team weaned Cameron off of insulin and treated the mutation with an oral medication called Glyburide. For the first time in his life, Cameron’s pancreas began to produce adequate levels of insulin. Instead of 10 shots a day, Cameron

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Cameron Lundfelt, 6, with his parents Alissa and Geoff Lundfelt in downtown Chicago during the first Monogenic Diabetes Forum last summer. Photo by David Christopher

only needed 3 pills. He was one of the first children transitioned from insulin shots to Glyburide in the United States, after Lilly Jaffe. When the Lundfelts arrived at the forum last summer, they were already acquainted with many of the families in attendance. They keep in touch through Facebook and e-mail, where they trade stories and monitor the progress of each other’s children, sharing the latest research being performed at the Medical Center. “These physicians and the families they’ve helped are pioneers,” said Geoff Lundfelt. “We’re helping each other provide the answers for future generations.” In this spring edition, we focus on the epidemic estimates of diabetes and how gene research here at the University of Chicago may lead to a cure. It follows a similar story we featured in the fall edition of the magazine about researchers who were working on a pill that would replace regular injections and IV-administered drugs for certain patients with multiple sclerosis. See the article on page 3 that highlights that oral medication, called fingolimod, recently approved by the Food and Drug Administration. Imagine our excitement when in the midst of researching the diabetes series we learned that the new dean and executive vice president of the University of Chicago would be Kenneth Polonsky,

MD, a renowned diabetes researcher. He began at the University of Chicago this past fall. It seemed like perfect timing to include a profile about him and his decades-long research into beta cells on page 9. These stories illustrate the unique triad here between patients, researchers and physicians trying to cure a disease that, by all predictions, will affect one in every nine Americans within 25 years.

Cheryl L. Reed Executive and Managing Editor, Medicine on the Midway momedit@uchospitals.edu


M I D W AY N E W S

O’Keefe Named Medical Center President

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haron O’Keefe, a nationally recognized authority on hospital operations, health care quality, patient satisfaction and employee engagement, was appointed president of the University of Chicago Medical Center on February 23, 2011. O’Keefe came to the Medical Center from her previous position as president of Loyola University Medical Center in Maywood, Illinois. She reports to Kenneth Polonsky, MD, dean of the Division of Biological Sciences and the Pritzker School of Medicine and executive vice president for medical affairs at the University of Chicago. O’Keefe and Polonsky previously worked together at Barnes-Jewish Hospital in St. Louis. “Sharon brings broad experience as a clinical and organizational leader, a passion to provide superior patient care and a proven ability to work effectively with physicians, nurses and other health care professionals,” Polonsky said. As Medical Center president, O’Keefe works with clinical faculty and the senior management team to improve the patient experience, develop outstanding clinical programs and enhance staff and physician satisfaction. She took over from

interim president Kenneth Sharigian, who played a large role in building Medical Center relationships with the community through connections with neighboring hospitals and clinics. O’Keefe said she took the job at the Medical Center because the opportunity to combine her clinical and administrative experiences in the competitive Chicago marketplace was “impossible to resist.” A Chicago native, O’Keefe, 58, received her bachelor of science degree in nursing from Northern Illinois University in 1974. In 1976, while working as a nurse at Loyola University Medical Center, she earned a master of science degree in nursing from that university’s nursing school. In 1979, she was recruited to Johns Hopkins Hospital as the director of nursing for surgical services. After six years at Hopkins, she became an associate hospital director at the 900-bed Montefiore Hospital in the Bronx, New York. From 1987 to 1989, she was senior manager for health care at the accounting firm Ernst & Whinney (now Ernst & Young). She returned to hospital administration in 1989 and spent 10 years as senior vice president for oper-

Sharon O’Keefe is the new president of the University of Chicago Medical Center. Photo courtesy of Loyola University Medical Center

ations at the University of Maryland Medical System in Baltimore. In 1999, she moved to Boston’s Beth Israel Deaconess Medical Center, a teaching affiliate of Harvard Medical School. In 2002, she became chief operating officer at Barnes-Jewish Hospital. She was appointed an examiner for the U.S. Department of Commerce’s Malcolm Baldrige National Quality Award in 2005 and currently serves on the National Institutes of Health Advisory Board for Clinical Research.

New Pill Changes Lives for MS Patients

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or the past 20 years, people with multiple sclerosis have had to accept needles as a part of everyday life. Regular injections or IV-administered drugs were the only way to prevent autoimmune attacks on their central nervous systems. But now there’s another option. On September 22, 2010, the Food and Drug Administration approved a new, oral medication called fingolimod that neurologists at the University of Chicago Medical Center have been testing in clinical trials since 2003. The drug is based on a type of fungus, originally discovered in the intestines of wasps by Japanese researchers. Observing that the fungus secreted a chemical with the natural ability to suppress immune responses, scientists refined the chemical into a drug intended for use in people receiving transplanted organs. The eventual clinical trials for that use failed, but a secondary use presented itself: neutralizing the immune system attacks in multiple sclerosis patients.

“This is the first pill, and that alone significantly changes our treatment options,” said Anthony Reder, MD, professor of neurology at the Medical Center. “It’s about 50 percent more effective than a placebo or one of the drugs that was injected into the muscles.” Anthony Reder, The drug could MD, professor of improve the quality of neurology at the life for about 400,000 Medical Center Americans who suffer from multiple sclerosis (MS). By trapping white blood cells in the lymph nodes during MS flare-ups, fingolimod prevents these cells from attacking the myelin sheath, a layer of fat surrounding nerve cells that helps to regulate the electronic signals that control body movement. In turn, the drug prevents the disease’s debilitating symptoms: impaired vision, pain and weakness that can make it a struggle to walk or even get out of bed.

“My life has been transformed,” said Kathy Deka, 45, a working mother from Elk Grove Village. She’s had no flareups or side effects since she started taking fingolimod three years ago, when Reder enrolled her in the clinical trials. So far, the drug has been tested for patients who, like Deka and 85 percent of all MS patients, have the mildest form of the disease, relapsing-remitting MS. Though these patients suffer unpredictable attacks, their myelin sheath has time to rebuild between attacks. Until now, there have been no treatments for patients with primaryprogressive MS, the most aggressive form of the disease, in which white blood cells continuously erode the myelin sheath. But Betty Soliven, MD, associate professor of neurology, is actively engaged in an ongoing collaborative study suggesting that, in addition to preventing attacks, fingolimod could actually protect or help regenerate myelin.

Medicine on the Midway Spring 2011

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M I D W AY N E W S

Stepping in a Pile of New Genomic Data

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enomic sequencing has made incredible strides in recent years, with both the cost and the time required to sequence an individual’s entire DNA dropping meteorically. Yet in order to sequence a species’ genetic information, you need a DNA sample. But what if a scientist wants to do a genomic study on an endangered species population, in the wild, without having to “trap or dart” a number of the animals to take blood samples? George Perry, PhD, a genetics researcher at the University of Chicago, pondered this dilemma in planning his own research on endangered lemurs in Madagascar. “We started thinking, ‘Is there a way to use fecal samples but to still do genomics work?’” said Perry, a postdoctoral researcher in the laboratory of Yoav Gilad, PhD, assistant professor of human genetics. “Then everyone would have the flexibility to collect population genomics data from any species at any time, as long as you can collect poop.” Believe it or not, the collection of genetic data from feces has a long scientific history. Alongside the unwanted parts of an organism’s diet, solid waste contains a small number of cells stripped from the lining of the organism’s digestive system. Scientists have extracted small segments of DNA from those cells for study, mostly from the intracellular struc-

tures called mitochondria, which have their own genes. But more extensive genetic mapping of nuclear DNA from fecal samples has been thwarted by another ingredient: bacteria. The dominance of bacteria over host DNA inside the digestive system carries over to the system’s product: Less than 2 percent of the DNA deposited in an animal’s droppings belongs to the organism itself. To separate the DNA a scientist needs from the DNA that isn’t needed, Perry decided to modify an existing technique known as DNA capture (which also has been used to sequence Neanderthal DNA). With DNA capture, custom-made RNA sequences are used as bait to fish specific stretches of DNA out of a mixture; metallic beads are attached to the RNA sequences, and a magnet separates out the target DNA from the unwanted material. Perry boosted the specificity of this model, incorporating extra washes and two separate rounds of DNA capture, to turn his lower-quality fecal sample into starting material sufficient for sequencing. In part, that meant starting with a lot more DNA than typically used for DNA capture: roughly two grams of feces from each animal. Fortunately, it’s an abundant resource. Once the purification was worked out, Perry and his colleagues John Marioni

The fecal DNA method may be useful in harvesting DNA from wild lemur relatives of this ring-tailed lemur, photographed at the Duke Lemur Center. Photo by George Perry

and Pall Melsted, along with Gilad, were able to pit fecal samples against blood samples (both taken from captive West African chimpanzees) to see if the quality of his new source measured up to the gold standard. The results, published recently in Molecular Ecology, were hardly crap: In terms of sequence accuracy, the two samples were almost identical. Perry will put his new method to work in Madagascar, where the arrival of humans 2,500 years ago produced massive changes in the population of native lemurs. By studying the genetic variability in today’s Madagascar lemurs, Perry can draw conclusions about how they managed to survive the human invasion and how their population sizes have changed over time, using that information to help their survival against ongoing challenges from our continued presence in their environment. It’s a noble goal, made possible by realizing the genomic potential of an ignoble substance.

New Insights into Sexual Health of Those with Diabetes

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ith diabetes rates on the rise and the lifespan of those with diabetes gradually lengthening, University of Chicago Medical Center physicians are questioning the frequency with which their older, diabetic patients are having intimate moments and whether the disease impacts their sexual health. In a recent article published in the journal Diabetes Care, a team led by Stacy Tessler Lindau, MD, associate professor of obstetrics and gynecology, offered insight into the sex lives of middle-aged and older persons with diabetes. In interviews with older adults, the researchers were able to analyze the sexual function of people with diagnosed and undiagnosed diabetes. They found that diabetes doesn’t necessarily hinder sex, but those with diabetes report having more sexual problems than those without it.

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“Many people with diabetes have sexual problems that are not being addressed,” Lindau said. Older persons with diabetes who are married or living with a partner tend to remain as sexually active as those in the general population. But diabetic men between the ages of 57 and 85 are more than twice as likely to be sexually active as diabetic women of the same age. A similar imbalance was seen regarding the discussion of sexual issues with a physician: 47 percent of men said they had talked with a doctor about the topic, compared to only 19 percent of women. “Failure to recognize and address sexual issues among middle-aged and older adults with diabetes may impair quality of life and adaptation to the disease,” said Marshall Chin, MD, senior author of the study and professor of

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medicine. “Sexual problems are common in patients with diabetes, and many patients are not discussing these issues with their physicians.” Those sexual problems included erectile dysfunction, loss of sexual interest and issues with orgasm, all of which were elevated in diabetic individuals compared to those without diabetes. Subdividing the persons with diabetes further into one group with diagnosed disease and one with undiagnosed disease allowed for an interesting analysis of whether those sexual problems are physiological or psychological. Men who were aware of their diabetes were more likely than undiagnosed men to have erectile dysfunction and loss of sexual interest, suggesting a psychological component to their problems, the authors proposed.


Child life specialist Tracy Lau, CCLS, uses an iPad to help 9-year-old Uriah Strong, of Oak Park, Illinois, prepare for surgery. Strong is a patient at Comer Children’s Hospital at the University of Chicago. Photo by David Christopher

Residents Go Mobile with iPads

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he patient, a woman in her mid-50s, first came to the clinic with a nagging cough. Her physician, Anoop Appannagari, MD, an internal medicine resident, ran a chest X-ray. Results were normal, but her uneasiness persisted. “I know you told me last time that my X-ray looked normal,” she pressed, “but are you really sure?” At that point, Appannagari pulled out an iPad, Apple’s popular tablet computer, and pulled up the X-ray. “It was a complete 180,” recalled Appannagari. “What I was saying became a lot more believable when she could see a tangible object before her eyes.” For patients and physicians alike, the iPad is transforming how medicine is done. In November, the University of Chicago Medical Center’s internal medicine residency program became the country’s first to provide iPads to all 115 residents for clinical use. The lightweight tablet allows physicians to access records, view lab tests

and place orders at the touch of a button. Preloaded with applications like The New England Journal of Medicine, it also puts medical research at residents’ fi ngertips. Spearheaded by residency program director James Woodruff, MD, and chief resident Bhakti Patel, MD, the initiative began with four iPads and a 2.5-monthlong pilot. Residents found that real-time access to Epic, the medical records system, enabled them to wrap up all their computer data entry during rounds and have more time to spend with patients. “It allowed them to return to the bedside, which, honestly, is where their education happens,” Patel said. As Appannagari discovered, the iPad also built trust with patients. “It brings you together and makes you one team.” For Patel and her residents, the device has become a critical part of doing good medicine. “It’s about delivering a better kind of patient care than we ever have before,” she said.

Burning Fat with a Full Night’s Rest

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new study by University of Chicago Medical Center researchers reveals that counting hours of sleep may be just as important to a diet’s success as counting calories. Researchers knew that sleep deprivation increased a person’s appetite. But Plamen Penev, MD, PhD, assistant professor of medicine, decided to test whether lack of sleep actually could influence a person’s weight. Ten overweight subjects were recruited to spend two 14-day periods in the sleep laboratory, where their diet, activity and time in bed were tightly controlled. Each subject received a low-calorie diet. They were allowed 8.5 hours in bed during one period and only 5.5 hours of sleep in the other.

Surprisingly, subjects lost a similar amount of weight (about 6.5 pounds) in both periods. But Penev and colleagues found that a full night’s rest led mostly to loss of fat, while the weight lost by the sleep-deprived was predominantly from muscle. The study was published in October 2010 in the journal Annals of Internal Medicine. “If your goal is to lose fat, skipping sleep is like poking sticks in your bicycle wheels,” Penev said. Further research will address what the optimum level of sleep is for shedding the right kind of weight. But in the meantime, the weight loss pillars of diet and exercise officially can be joined by a much more enjoyable partner — a good night’s sleep.

Briefly Membrane Protein Researchers Stick Together The cell membrane is a factory floor, filled with complex machines that act as doors, power plants, communicators and defenders. Until recently, most of these contraptions have been too small for scientists to study directly. But a $22.5 million “glue grant” announced last August will unite an international group, led from the University of Chicago, in bringing clarity to these biologically critical membrane proteins. “We have been able to put together almost a dream team of people currently involved in this type of research,” said Eduardo Perozo, PhD, professor of biochemistry and molecular biology at the University of Chicago and the leader of the team. Nearly 30 investigators from 14 institutions will pool their expertise in computational science, biophysics and other fields to study the dynamics of membrane proteins. The research is expected to provide valuable information about such diseases as heart disease, diabetes and neurological disorders, and to discover ways to improve drug design and delivery.

Physics and Biology Will Join Forces in New Research Center

William Eckhardt Research Center Photo courtesy of HOK/JCDA/AJSNY

In the new William Eckhardt Research Center, projected to open along Ellis Avenue in 2015, laboratories from two different fields will share space as part of a new program that finds common ground between physics and biology at the very small scale: the new Institute for Molecular Engineering. The University of Chicago’s largest new unit since the founding of the Harris School of Public Policy Studies in 1988 will be challenged to apply the increasingly shared language of biology, chemistry and physics to global needs, said Raphael Lee, MD, ScD, the Paul and Ailene Russell Professor of Surgery, Medicine and Organismal Biology and Anatomy. “On the molecular scale, behavior is described by laws of physics and chemistry,” Lee said. “The rules of biology and physics are identical at the molecular scale. That’s where the fields’ boundaries blur and overlap.” For example, the selectivity of a cell membrane could inspire systems for water filtration, or nanoscale materials might be designed to aid stem cell therapies. “Engineering is about solving problems, and we are in the business of solving problems,” said Julian Solway, MD, the Walter L. Palmer Distinguished Service Professor of Medicine and Pediatrics.

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S P E C I A L F E AT U R E

R E S E ARC H ERS H U NT FO R TH E G EN E TI C ROOTS

OF A CATASTROPHIC DISEASE By Jennifer Martin

Among the most serious health problems the United States faces in the next 25 years, diabetes — particularly type 2 — eclipses all others in the opinion of numerous physicians and researchers. Based on forecasts from the Centers for Disease Control and Prevention, the number of Americans with the disease will rise from 24 million to 44 million by 2034, and the annual cost of their care will triple to $336 billion, estimates Elbert Huang, MD, associate professor of medicine at the University of Chicago Medical Center. The reasons behind the burgeoning diabetic population are complex, rooted in the aging of the population, rising numbers of pediatric and young adult cases, soaring obesity rates and greater life spans among diabetics themselves due to advances in medicine.

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he implications for everyday Americans are enormous, and not just for those whose families are touched directly by the disease. Huang and his colleagues estimate that by 2034, Medicare costs for diabetes care will nearly quadruple from $45 billion to $171 billion annually — more than 30 percent of the agency’s current annual budget, and nine times the annual budget of NASA. Physicians say the answers to this looming health crisis are as complex as the disease itself, requiring a multifaceted approach involving research, education, innovative approaches to prevention and treatments, community outreach and cooperation between family physicians and specialists. As with other health issues, physicians say, diabetes is best treated with prevention. For some leading-edge scientists, that means going directly to the roots: gene research.

Graeme Bell, PhD, (left) with Honggang Ye, PhD, research professional associate, says scientists increasingly are diagnosing diabetes cases that are monogenic in nature — caused by a mutation in a single gene. Photo by Bruce Powell

The Genetics of Diabetes In 2006, 6-year-old Lilly Jaffe made national headlines when she became one of the first Americans to receive a new treatment for monogenic neonatal diabetes mellitus, a rare form of diabetes caused by a single gene mutation. Lilly always had been able to produce some insulin, just not enough to keep up with her blood sugar levels. Under a new treatment protocol at the University of Chicago Medical Center, she started taking sulfonylurea pills. Sulfonylureas bind to a particular protein in the membranes of pancreatic beta cells, slowing down their outflow of potassium ions. This causes the electrical potential over the membranes to become more positive and leads to a rise in intracellular calcium levels. The end result: The beta cell is stimulated to release higher amounts of insulin. Sulfonylureas have been used for decades to treat type 2 diabetes, but Lilly was one of the first monogenic diabetes patients to receive them. Finally able to produce adequate amounts of insulin on her own, she was free of painful daily insulin shots and frequent glucose measurements for the first time in her life. Although patients like Lilly are in a dramatic minority, the study of monogenic diabetes has marked a significant step forward in diabetes research, said Roy Weiss, MD, PhD, chief of the Section of Adult and Pediatric Endocrinology, Diabetes and Metabolism and Rabbi Esformes Professor of Medicine and Pediatrics at the Medical Center. “As we learn from these children and young adults with monogenic diabetes, we’re better able to understand the pathophysiology of diabetes,” Weiss said. “This ultimately may help us to develop more effective treatments for patients with other forms of the disease.” Lilly’s treating physician, endocrinologist Louis PhilRoy Weiss, MD, PhD, the Medical ipson, MD, PhD, who also Center’s lead endocrinologist, said studies biophysical mechamedical residents are showing nisms of insulin secretion, said a greater interest in community medicine than they were 10 years research on monogenic diaago. Many choose to volunteer betes has taken a myriad of at clinics in the most medically new directions in the four years underserved areas of Chicago, where diabetes rates are high. This since Lilly was diagnosed. could mean that some diabetes “At the time, Lilly was patients are receiving ongoing one of fewer than 100 cases primary care for the first time in their lives. Photo by Bruce Powell in the world who had been

“The monogenic component seems to be expanding, and it’s one of the most exciting frontiers of research that we’re involved in right now.” — Graeme Bell, PhD successfully treated this way,” said Philipson, director of the Kovler Diabetes Center (KDC), part of the Section of Adult and Pediatric Endocrinology, Diabetes and Metabolism at the University of Chicago. “We now suspect there may be thousands of children worldwide who have the condition.” In fact, within one year of Jaffe’s case, University of Chicago physicians diagnosed 13 more children with the disorder and transitioned them successfully to sulfonylurea pills. Today, the KDC follows more than 80 American patients who have been switched from insulin injections to pills, ending the need for insulin shots, sometimes multiple times per day. Researchers also are discovering more variations of monogenic diabetes, a condition distinguished from type 1 (an inflammatory condition in which the body attacks and kills the beta cells of the pancreas, which produce insulin) and type 2 (a condition thought to be triggered by deficits in nutrition and activity, leading to insulin resistance and insufficient insulin production). When diagnosed in children under one year of age, monogenic diabetes usually is caused by a mutation in one of any of three particular genes — KCNJ11, ABCC8 or INS. However, researchers now know that more than 20 individual genes have been linked to different forms of monogenic diabetes. The majority of patients have mutations in genes known to cause maturity onset diabetes of the young (MODY). For example, mutations in the HNF14a gene trigger a condition called MODY 1, characterized by a gradual loss in insulin production levels, usually by young adulthood. MODY 5 is caused by mutations in the HNF1ß gene and usually involves atrophy of the pancreas, renal disease and, in some cases, anomalies of the reproductive system. “The monogenic component seems to be expanding, and it’s one of the most exciting frontiers of research that we’re involved in right now,” said Graeme Bell, PhD, the Louis Block Professor of Medicine and director of the Diabetes Research and Training Center (DRTC) at the University of Chicago. “In some cases, patients who appear to have type 1 or type 2 diabetes are turning out to have monogenic diabetes.”

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DECODING DIABETES

Louis Philipson, MD, PhD, directs the Kovler Diabetes Center. The center brings together researchers, physicians from all areas of medicine and surgery, nurses, social workers, dietitians and other health professionals to help diabetes patients. Photo by Bruce Powell

Center Focuses on Diabetes Care Located on the South Side of Chicago, the University of Chicago Medical Center is at the epicenter of medically underserved patients. Unfortunately, diabetes rates in this area of the city are high. In 2006, the Medical Center launched the Kovler Diabetes Center (KDC) as part of the Section of Adult and Pediatric Endocrinology, Diabetes and Metabolism. “Diabetes is an insidious problem, especially among individuals who don’t have regular health care,” noted Section Chief Roy Weiss, MD, PhD, the Rabbi Esformes Professor of Medicine and Pediatrics. “The tragedy is that serious complications can be prevented with early diagnosis and treatment.” The KDC connects with the local community by planning educational seminars with community health centers on the South Side. It also advances diabetes care by assisting faculty in conducting clinical trials, collaborating with other diabetes researchers worldwide, educating health professionals and providing consultations for diabetes specialists and physicians at other institutions. “There’s tremendous enthusiasm about the work we’re doing,” said Louis Philipson, MD, PhD, director of KDC, which is part of the Committee on Molecular Metabolism and Nutrition and the National Institutes of Health–funded Diabetes Research and Training Center. “We’re able to reach into the community and serve those who are suffering from some of the most devastating effects of diabetes. At the same time, we’re engaging in high-level research. This is an exciting time to be at this institution.” The KDC’s executive director is Peggy Hasenauer, RN, MSN, who has extensive experience in diabetes management, research and education. She has managed the Medical Center’s kidney/pancreas transplant program and collaborated with Philipson to establish its first islet cell transplantation program. She also has significant experience as a diabetes technology consultant, assisting clinicians and individuals with diabetes in manPeggy Hasenauer, RN, aging insulin pump therapy and MSN, is the KDC’s executive director. Photo by Dan Dry glucose sensor technology.

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In 1992, when Bell performed groundbreaking research that isolated several gene mutations involved in MODY, the condition was thought to affect adolescents and young adults almost exclusively. Researchers now know that MODY can develop in adults as late as their 50s, and many adults with MODY are misdiagnosed as having type 1 or type 2 diabetes. A diagnosis of monogenic diabetes can refi ne the course of treatment, said Bell, who worked closely on the MODY studies with diabetes researcher Kenneth Polonsky, MD, now dean of the Division of Biological Sciences and the Pritzker School of Medicine and executive vice president for medical affairs at the University of Chicago. (See the profi le of Polonsky on page 9.) Many forms of MODY can be treated with sulfonylurea drugs, in varying doses. Patients with MODY 2, caused by mutations in the glucokinase gene, affecting glucose metabolism, may have such a mild form of diabetes that they require no clinical treatment beyond nutritional counseling and an exercise regimen. Some cases of MODY are best treated with a meglitinide class of drugs, which more rapidly stimulate the release of insulin and have a shorter duration compared to sulfonylurea drugs. Bell said new treatments are on the horizon as researchers learn more about monogenic diabetes in all its variations. Some researchers believe there could be dozens of other types of MODY that have yet to be discovered.

Receiving a New Diagnosis Genetic testing has allowed University of Chicago scientists to find monogenic diabetes in unexpected places. Researchers discovered that one form of monogenic diabetes that was thought always to cause death in childhood actually could appear in milder forms, allowing patients to live into their adulthood. “We had to rethink our conception of that disease,” Philipson said. Mike Eizenga, 28, a Chicago native, is a living example of how the understanding of diabetes is evolving. Diagnosed at age 15 with type 1 diabetes, he had a daily regimen involving three to four insulin injections and at least five blood sugar tests. Then he met Michael Jaffe, Lilly’s father, at an educational event sponsored by the Juvenile Diabetes Research Foundation. The two quickly became friends, then business associates. Eizenga mentioned that he was looking for a new endocrinologist. That’s when he learned about Philipson, who recommended genetic testing. “He said the odds were low that I had a genetic mutation, but he thought it was worthwhile to do the testing anyway,” Eizenga remembered. In 2008, to his surprise, Eizenga tested positive for MODY 3, caused by a mutation in the HNF1a gene. Those with MODY 3 have a reduced number of beta cells or have beta cells that are impaired in their function. Eizenga switched to sulfonylurea pills and has Mike Eizenga of Chicago thought not taken insulin injections he had type 1 diabetes for 10 since. “The reaction was just years. Then he was diagnosed complete joy and shock,” he with MODY and he went from a daily regimen of three to four said. “I think everybody in my insulin injections and at least five family was in disbelief.” blood sugar tests to taking one Phenomena such as these pill with every meal. Photo by David Christopher point to an underlying reality


about diabetes: Science ultimately may find thousands of genetic variations behind the disease, making distinctions between juvenile and adult diabetes, or type 1 and type 2 diabetes, an obsolete approach. Even type 2 diabetes, partially attributed to unhealthy behaviors, usually has an underlying genetic component involving metabolism, insulin secretion or other factors, physicians say. To predict risk in individuals, researchers need to study vast numbers of diabetes patients and their families. The KDC has positioned itself to accomplish this by launching another ambitious project: the use of databases to identify and genetically profile individuals with diabetes and their relatives.

Family Portraits: The Bigger Picture Lilly Jaffe’s case inspired intense interest within the community of diabetes patients and their families, who tend to network, attend seminars and stay abreast of the latest research. Parents started requesting genetic profiling of their diabetic children, and adults who had been diagnosed in childhood wondered if they might have a monogenic form of the disease. In Illinois, Philipson, Bell and Siri Atma Greeley, MD, PhD, instructor in pediatric endocrinology, helped craft Lilly’s Law, which required Illinois physicians and other health care providers to enroll all infants diagnosed with diabetes mellitus in the Neonatal Diabetes Mellitus Registry, created by the KDC. “If all babies with diabetes diagnosed under one year are enrolled, we can identify those with conditions we may be able to help with medications rather than injections,” Philipson said.

While the participation of Illinois health care providers is mandatory, the database is open to physicians and parents nationwide. The database was constructed under Greeley’s direction with support from the Juvenile Diabetes Research Foundation International.

“If all babies with diabetes diagnosed under one year are enrolled, we can identify those with conditions we may be able to help with medications rather than injections.” — Louis Philipson, MD, PhD In addition, Philipson, Bell, Greeley and pediatric endocrinology fellow Rochelle Naylor, MD, launched a second registry for those affected by the MODY version of the disease. Both databases and the genetic research at the University of Chicago have attracted interest from physicians, researchers and patients around the world. “Among Lou, Rochelle and me, we probably get at least 40 inquiries a month from patients, or parents with diabetic children,” Greeley said. “Originally, the questions were geared toward neonatal diabetes, but more and more, it’s other types.” The University of Chicago sends the patients (or their parents) a genetic profiling kit to collect small saliva and blood samples. The kits are sent directly back to the university, bypassing any potential laboratory delays. “We can do some pretty remarkable things with those samples,” Greeley said. If initial testing points to monogenic diabetes,

Kenneth Polonsky, MD: University of Chicago Leader and Diabetes Researcher When Kenneth Polonsky was appointed to his chief leadership position, the Medical Center welcomed back a physician who has made significant contributions in the field of diabetes research. Polonsky first came to the University of Chicago in 1978 for an endocrinology fellowship, working closely with distinguished diabetes researcher Arthur Rubenstein, MD, to study C-peptide, a byproduct of insulin production. Later, Polonsky collaborated with another distinguished diabetes researcher at the university, Graeme Bell, PhD, to conduct groundbreaking research on insulin production in people who have diabetes resulting from specific genetic alterations. “We initially started working in dog models,” said Polonsky, now dean of the Division of Biological Sciences and the Pritzker School of Medicine as well as executive vice president for medical affairs at the University of Chicago. “The body produces both insulin and C-peptide molecules in equal quantities, but the liver extracts insulin, taking it out of the bloodstream. We developed a way to measure insulin secretion levels in dogs by measuring their C-peptide levels.”

Polonsky and Bell went on to study insulin secretion in humans and focused on a form of diabetes called maturity onset diabetes of the young (MODY). As a result of this and other research work, they have both been elected to the Institute of Medicine of the National Academies, one of the highest honors medical scientists in the United States can receive. Polonsky became the section chief of endocrinology in 1987 and also directed the university’s Diabetes Research and Training Center. He left Chicago in 1999 to serve as chair of the Department of Medicine at Washington University in St. Louis and physician-in-chief at Barnes-Jewish Hospital. But his passion to study diabetes remained with him, and he continued his research, publishing more than 250 scientific papers. He has continued to be active in scientific circles and has served on the editorial boards of several journals and on national and regional committees of a number of organizations, including the American Diabetes Association and Juvenile Diabetes Research Foundation. Polonsky’s more recent studies have focused on using novel, sensitive and accurate methods of evaluating beta cell func-

Kenneth Polonsky, MD, plans to continue his research in diabetes at the University of Chicago. Photo by Bruce Powell

tion in patients with mild diabetes or who have not yet developed diabetes, and on forms of diabetes that result from genetic causes. In October 2010, he returned to Chicago to take the helm of the Medical Center. However, Polonsky plans to continue his diabetes research along with his longtime friend and colleague Graeme Bell. “The task is to learn as much as we can about the disease and then hope that we’ll be able to develop novel therapies,” Polonsky said. “There are many ways science can contribute to fi nding a cure.”

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DECODING DIABETES

100 Years of Diabetes Research at the University of Chicago University of Chicago researchers hunt for the roots of a deadly disease 1907

In 1907, Robert Russell Bensley and his student, M. A. Lane, devised staining techniques that allowed researchers to visualize the panBensley creas more clearly. Alpha and beta cells (containing glucagon and insulin) were described for the first time. Claire Bakke, 9, of Bourbonnais, Illinois, a type 1 diabetes patient, listens through a stethoscope belonging to her physician, Siri Atma Greeley, MD, PhD, instructor in pediatric endocrinology. Greeley helped launch a new patient database that could help researchers enhance their understanding of the genetics involved in maturity onset diabetes of the young (MODY). Photo by Bruce Powell

Greeley recommends that patients come to the university for further testing. With the patient’s permission, the University of Chicago enters his or her genetic information and medical history into the registries, as well as the genetics and medical histories of family members. Weiss said this comprehensive information will help researchers make connections between family members with the disease, as well as distinctions between diabetes patients and their relatives without the condition. “There can be hundreds of genetic mutations from parent to child and sibling to sibling,” he said. “As we obtain better information, it becomes more straightforward.” The growing registries now include more than 500 DNA samples: 200 with neonatal diabetes, 100 with MODY, and 200 relatives. Those who register do it for altruistic reasons. They understand that their genetic information may not immediately lead to a cure but could help scientists understand the genetic roots and variations of diabetes. Philipson said it’s an ideal time to be engaged in genetic testing, as the cost is dropping dramatically. “One day, the cost to sequence the entire genome — 22,000 genes — will be less than it is today to sequence four or five genes,” he said. “You won’t have to think about, ‘Do I sequence this gene, or that gene?’ We’ll have the entire map.” Currently it costs about $1,200 to sequence an individual gene through an approved commercial laboratory genetic testing company, a process that involves mapping out the position of the individual nucleotides of DNA (adenine, guanine, thymine and cytosine), as well as other DNA components. A diagnosis of monogenic diabetes usually involves examining anywhere from one to five genes, costing up to $6,000. Health insurance plans usually cover the charges. Verification of research findings, when needed, is done at significantly lower cost. Physicians say the registries could help pave the way for personalized diabetes treatments based on the individual’s genetic configuration. “A comprehensive registry of all of our patients within the next five years is our goal,” Philipson said. “It’s a complex endeavor, but it’s worthwhile. In a sense, it’s quality control. It increases our ability to understand what we’re doing at any moment in time.” ■

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1910 Between 1910 and 1911, Ernest Lyman Scott discovered the first biological indication of the existence of insulin (then referred to as “internal secretion”). Around that time, Fred Drennan conducted an experiment to indicate that the “internal secretion” of the pancreas (i.e., insulin) was circulating in the blood.

1911 Later, in 1911, Bensley published a seminal work describing the anatomy of the pancreas in detail, showing that the origin of pancreatic islets derived from short branches of the pancreatic ductal network. He also devised a method for measuring islet cell mass, still used today.

1930 In 1930, William Bloom discovered a third “granular cell type” in the islets of Langerhans, named D-cells.

1934

McLean

In 1934, Franklin McLean and A. Baird Hastings devised a new way to measure calcium in blood. Calcium ions are critical triggers of insulin secretion.

Hastings

1936 – 1960s From 1936 to 1960, Rachmiel Levine and Samuel Soskin introduced the theory that the greater the amount of glucose present in the blood, the greater the amount that is used by the body. Soon after, Levine proposed that insulin served as the key regulatory factor for stimulating the transport of glucose into the cells.

In the 1940s and 1950s, Albert L. Lehninger studied how fatty acids are metabolized. Konrad Bloch Bloch showed that insulin regulated the creation of fatty acids. Bloch won the Nobel Prize in 1964 for his studies of cholesterol and fatty acid metabolism. In the late 1950s and early 1960s, Ira Wool first showed that insulin could stimulate protein synthesis in muscle and other tissues, independent of glucose or amino acid transport.

1965 – Today In 1965, Donald Steiner discovered the molecule proinsulin and how it was made in the beta cell, where it was processed and secreted as insulin. The landmark discovery paved the way for the Steiner manufacture of purified synthetic human insulin used today. Shortly afterward, Steiner and Arthur Rubenstein developed the first radioimmunoassay for C-peptide, a useful analytical tool in the clinic and research lab to measure insulin secretion to help treat and study diabetes. Rubenstein, Steiner and Howard Tager were key members of a team that discovered that a variety of rare mutations in the coding sequence of the preproinsulin gene could cause diabetes. Graeme Bell was a key member of the team that cloned the human insulin gene and the insulin receptor. He also cloned the glucagon gene. Since 1991, together with Nancy Cox and Kenneth Polonsky, Bell has identified four out of the five Bell known genes associated with maturity onset diabetes of the young (MODY) and found functional mutations in these, which, in turn, has given valuable insight into the pathogenesis of diabetes. Since then, Bell and Cox discovered the first gene associated with type 2 diabetes. Bell, Louis Philipson, Steiner and colleagues discovered in 2007 a new series of insulin gene mutations that cause severe neonatal diabetes. Photos courtesy of the Kovler Diabetes Center


Research Paves Way for New Treatments By Jennifer Martin

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n genetic research related to diabetes, the focus often turns to molecular pathways and signaling mechanisms that the genes themselves create. These dynamics can determine how well the beta cells function — or even whether they survive. “You are born with a couple of million beta cells, but if some start functioning badly or dying, you can develop diabetes,” said Christopher Rhodes, PhD, research director of the University of Chicago’s Kovler Diabetes Center (KDC). “A new therapeutic concept is to hold on to what good beta cells you have.” For example, when type 2 diabetes is linked with obesity, beta cells are known to die off for several reasons. Lipotoxicity is one hypothesis (too much fat in the body where it is not supposed to be). Lipotoxicity can affect the beta cells: A buildup of lipid can cause dysfunction and even kill them. However, two-thirds of obese people do not develop diabetes, Rhodes noted. In these people, the beta cells perform two remarkable feats: They increase in number Christopher Rhodes, PhD, is exploring multiple ways to protect beta cells and their insulin production. Photo by Bruce Powell and boost their production of insulin to keep up with the metabolic overload (characterized by blood sugar levels threatening to outpace the amount in his “cousin.” Researchers in Rhodes’ lab have found that of insulin that the body can produce). The change also helps a key gene, FoxO1, is dysfunctional in the diabetic animals. compensate for insulin resistance — when insulin becomes “We hope in about a year or so, we’ll have a good idea about less effective in lowering blood sugar levels. what’s wrong with the regulation of that gene and, thus, new However, in the unlucky remaining third of obese indi- insight into beta-cell susceptibility in diabetes,” Rhodes said. viduals, the beta cells do not compensate adequately, and In another study, Rhodes’ team is studying IRS2, another these people fail to produce enough insulin (type 2 diabetes). gene that is critical for the beta cell’s growth and survival. This difference points to a genetic link when the disease is “When this gene does not function properly, the mice don’t triggered, based on whether one’s beta-cell population can live more than 20 days because they die of diabetes,” Rhodes counteract the obesity or not. If researchers can better under- said. “We are working on how to manipulate the expression stand the molecular pathways that enable beta cells to of this gene.” The metabolism of glucose has a significant compensate for obesity and/or protect the beta cells from effect on the IRS2 gene’s expression, he said. Rhodes’ lab has metabolic overload, then this will lead the way to novel worked out two major molecular pathways involved and hopes therapeutic approaches to treat or prevent the disease. that this new knowledge can be translated into pharmaceutical therapies someday. “One way of looking at beta cells is to consider them as an “You are born with a couple million beta insulin producing factory,” Rhodes explained. “Normally, there is plenty of insulin stored in the warehouse to effectively discells, but if some start functioning badly tribute when the need arises, such as after a meal. In obesity-linked or dying, you can develop diabetes.” type 2 diabetes, the chronic demand for insulin becomes so great that the beta cells’ insulin stores become severely — Christopher Rhodes, PhD depleted, and insulin secretion becomes dysfunctional.” Rhodes’ team is experimenting with a drug that will Rhodes’ lab is taking several avenues of research to allow the beta cells to rest overnight and rebuild their explore mechanisms of protecting beta cells at the molecular internal insulin levels. Rhodes is testing an existing drug level. In one study, researchers are studying closely related on obese mouse models. Already approved by the Food mice that are obese. These two strains of mice are about 80 and Drug Administration, the drug is used to treat insulipercent genetically identical, and they become obese and nomas — cancerous insulin cells. If this preclinical study insulin resistant to a similar extent, but one obese mouse works, the treatment should be more quickly translated to gets full-blown diabetes and the other does not. The differences patients in the clinic. are profound. There is a marked loss of beta cells in the Rhodes uses the same factory analogy to explain another diabetic mouse, but there is increased beta cell compensation project investigating insulin production. “As happens within

Medicine on the Midway Spring 2011

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DECODING DIABETES a lot of factory warehouses, some products pass their ‘sell-by date,’ and this is also true of insulin stored in the beta cell,” he said. If insulin is stored in the beta cell and not secreted in about five days, it is internally degraded by a process called autophagy. Without this janitorial activity, beta cells do not function well. With too much, they can die. Rhodes’ lab has found that autophagy is excessive in beta cells of lean (not obese) individuals with type 2 diabetes and is investigating if this contributes to loss of functional beta cells in those patients. During the course of this research, his researchers have found a novel molecular mechanism to control autophagy. As autophagy is a process found in all cells, this discovery also may be applicable to other conditions, such as cardiomyopathy and neurodegenerative diseases. Rhodes’ diabetes research also goes beyond the pancreas. Scientists have known for many years that the brain has some degree of control over beta-cell functions, including insulin secretion, but the precise regions of the brain involved were unknown. In collaboration with a group at the University of Michigan, Rhodes’ lab recently used a pseudorabies virus (a virus engineered to behave like the rabies virus, which only infects the nervous system) in mice. Once injected into the islet cells of the pancreas, the virus traveled along neurons back to a specific section of the brain: able subregions of the hypothalamus. “We have known for more than 100 years that the brain can control insulin secretory function, but now we have the map of that,” Rhodes said. “We’re pretty excited about this result and amazed that only a tiny part of the brain has such influence over pancreatic endocrine function. Now we have to find out which hypothalamic neurons do what to beta cells, and how.” Theoretically, as their research goes on, gene mutations linked to changes in the hypothalamus may provide researchers with another line of inquiry to follow in this brain– beta cell connection.

Early Warning System There’s no question genetics can play a role in the development of diabetes: The sibling of a diabetic individual is 2.5 times more likely to develop the disease than a random member of the general population. However, as researchers note, genetic factors may only go so far in determining a person’s fate. If one monozygotic (identical) twin develops type 1 diabetes, there’s only a 50 percent chance that the other twin will be diagnosed with the disease in his or her lifetime. “You can be born with the worst possible genetics, and it still is not a given that you will develop diabetes,” Greeley said. Geneticist Nancy Cox, PhD, director of a laboratory that collaborates with Bell’s laboratory in leading-edge diabetes research, notes that it has taken hundreds of thousands of samples just to find the few genetic factors that are known for certain to be linked to diabetes. “Even with some genetic factors that we have discovered, we still don’t entirely understand why and how they are associated with diabetes,” added Cox, chief of the Section of Genetic Medicine at the University of Chicago’s Department of Medicine. “It means we’ve got a lot of work to do.” In the immediate future, the power behind genetic research may lie in its ability to uncover a genetic predisposition in families, warning individuals to stay vigilant about their health. Preventive therapies such as nutritional changes and exercise may delay or prevent the onset of diabetes, and if it does occur, early and aggressive pharmaceutical treatments

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Elbert Huang, MD, says high-level research, clinical care and patient counseling are all part of the equation for addressing the epidemic of diabetes. “We need to pursue all those areas; you cannot divest in one,” he said. Photo by Bruce Powell

“If you can have buy-in on the patient’s part and get them involved in selecting the goals of their diabetes care, you’ll hopefully have a better outcome.” — Elbert Huang, MD can help prevent complications such as retinopathy or kidney failure from developing later. Treatment tends to be more successful when patients believe in its effectiveness and work closely with their physicians to implement it, ideally from the early stages of the disease, says Elbert Huang, MD, associate professor of medicine at the University of Chicago Medical Center. “There’s a huge educational component,” said Huang, a general internist who works with individual diabetic patients as he continues to conduct large-scale studies on the diabetic population. “If you can have buy-in on the patient’s part and get them involved in selecting the goals of their diabetes care, you’ll hopefully have a better outcome.” ■

Pick a Virus. Any Virus. One of the best ways to investigate genes in normal beta cells is to use bioengineered viruses, like adenoviruses and lentiviruses. The Kovler Diabetes Center has a library of more than 400 viral vectors for this type of research, capable of specifically changing the way various genes are expressed. “We have a large viral-vector library, and we’re happy to make these reagents freely available to other researchers worldwide. We only charge shipping costs,” said Christopher Rhodes, PhD. Another service for diabetes researchers worldwide, housed in Rhodes’ lab of the Kovler Diabetes Center and funded by the Juvenile Diabetes Research Foundation International, is one that definitively analyzes if cells derived from alternative sources, including stem cells, appropriately produce insulin so that they may eventually be used in beta-cell replacement therapies for type 1 diabetes.


When a Virus Doesn’t Just Cause a Cold

A virus may have triggered diabetes in Joey Knoop when her immune system turned against her own beta cells at age 17. Photo by Bruce Powell

By Jennifer Martin

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n some cases, diabetes may be triggered suddenly when those who might have a genetic predisposition encounter a factor in the environment. Joey Knoop, a 47-year-old woman from Valparaiso, Indiana, may be one such case. She was diagnosed with type 1 diabetes at age 17 after coming down with a virus. “I was trying to lose a little bit of weight,” remembered Knoop, now a married mother and schoolteacher. “A girlfriend and I were eating apples at lunch and drinking Tab, which was common in 1980. Then I caught a strange virus. I thought it was a cold.” A week later, Knoop started losing weight. At first, she was thrilled. Then she became thirsty and started craving sugar. She eventually was diagnosed with type 1 diabetes. “Viruses may precipitate autoimmune diabetes in those who are highly predisposed,” said Siri Atma Greeley, MD, PhD, instructor in pediatric endocrinology at the University of Chicago Medical Center. “It’s probably something ongoing where the virus tipped them over the edge.” Type 1 diabetes is a polygenic disorder, involving multiple genes that cause the body to attack its own beta cells. “There are over 40 different gene loci that researchers are looking at, and it’s not entirely clear which genes are playing which roles,” Greeley said. However, in type 1 diabetes, the human leukocyte antigen (HLA) complex is involved. The HLA complex contains a

Microscopic Transplants In an islet cell transplant, islet cells are isolated from the pancreases of deceased donors and then infused through the veins into the liver of the recipient. Eventually recipients produce insulin on their own. Joey Knoop’s physician, Piotr Witkowski, MD, PhD, performs the transplants as part of clinical studies. He hopes to obtain approval for the procedure from the Food and Drug Administration so that it will be covered by insurance companies. “Our hope is to get even better results by increasing the effectiveness of immunosuppressive medicines used in

number of genes that control immune responses in the body. In cases like Knoop’s, where a virus seems to trigger diabetes, the virus may contain substances similar to pancreatic beta cells, which produce insulin. In some people, this could cause the immune system to turn against both the virus and the beta cells. More recent studies suggest that autoimmune destruction of beta cells in human type 1 diabetes involves a very slow inflammatory process that may take years to progress to overt disease. During this long process, even a small percentage of functioning cells can produce enough insulin to control blood sugar levels. Anything that suddenly heightens this level of inflammation, such as a nasty virus, may be enough to kill off the last remaining cells producing insulin. Knoop spent the 25 years after her diagnosis experiencing severe blood sugar spikes and crashes, in spite of strict exercise and nutritional control. “My doctors kept thinking I was cheating. I could not convince anybody how hard I was trying,” she said. “Even on an insulin pump, I was having a terrible time.” Knoop’s problem was that she was extremely sensitive to the insulin shots she took. Even one extra unit of insulin could cause fainting or seizures, and, as she says, “One unit can fit on the head of a pin.” Knoop was blacking out several times a month and feared she might not keep her job as an elementary school teacher. “I would just go into my room and want to cry, I felt so hopeless,” she said. Then her physician in Valparaiso referred her to the University of Chicago Medical Center, where she qualified for an islet cell transplant. The experimental clinical treatment involves transplanting islet cells from a deceased donor into a living recipient. Islets are clusters of cells scattered throughout the pancreas that contain beta cells. Knoop underwent the transplant in three stages. “After the first transplant, my insulin need was cut in half,” she said. “After the second, it was cut in half again. After the third, it was gone. I was making my own insulin.” Knoop now is free of insulin injections and lives a normal life while taking immunosuppressive medications. She has no regrets about undergoing an experimental treatment. “It was absolutely the most wonderful experience,” she said. “It was really reassuring. I knew that I was getting the best care.” ■

the transplants,” said Witkowski, assistant professor of surgery and director of the Pancreatic Islet Transplant Program. The University of Chicago Medical Center is one of 13 medical centers in the United States — and 21 in the world — that offer experimental islet cell transplants to type 1 diabetes patients meeting certain clinical criteria. Patients typically qualify for the transplants because they suffer from hypoglycemic unawareness — dangerous episodes when their blood sugar drops too low without any warning symptoms, causing sudden loss of consciousness, seizures or brain damage.

Piotr Witkowski, MD, PhD, performs islet cell transplants as part of clinical studies. Photo by Bruce Powell

Medicine on the Midway Spring 2011

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DECODING DIABETES

Community Education Empowers Diabetes Patients

Anita Thomas, with her daughter Janiya, 9, enrolled in a pilot program at Woodlawn Community School where she learned from teachers, including a Medical Center doctor, why her cooking and eating habits posed a risk to her and her daughter. Photo by Bruce Powell

By Kadesha Thomas

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nita Thomas is worried about her daughter. Nine-yearold Janiya is an active, smart student at Woodlawn Community School, but she savors sugary drinks and fattening, salty foods. Janiya’s eyes roll upward and a subtle smile appears on her face as she indulges in heavy meals, like macaroni and cheese. Thomas knows the feeling, too. “I was raised by my mother and grandmother. When they cooked, it had to have oil. It had to have salt.” In the spring of 2009, Thomas enrolled in a 14-week series of health education classes, called Power-Up, a pilot program for Woodlawn Community School parents and students. The classes showed Thomas exactly why her cooking and eating habits posed a risk. In one session, Deborah Burnet, MD, the University of Chicago Medical Center’s chief of general internal medicine and the program’s principal investigator, poured potato chips into a brown paper bag and crushed them. The grease saturated the bag until it looked like wax paper. Thomas thought, “This is what I am doing to my body?” She had a similar epiphany when Power-Up teachers discussed how to measure salt and sugar. Thomas thought she was just adding a sprinkle of seasoning. But after learning how sprinkling quickly amounted to a teaspoon, Thomas realized she’d been dumping multiple teaspoons of salt or sugar onto her food without realizing it. “That teaspoon analogy has stuck in my head,” Thomas said. “When you have that visual, you think, ‘Maybe I don’t need to have that.’” Since Power-Up, Thomas has traded the salt shaker for garlic and the sugary drinks for water bottles. Janiya has gone from eating fruits and vegetables once a week to several times a day. It’s an adjustment, Thomas said, but she and Lorri

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University of Chicago Medical Center

McClinton, Woodlawn Community School’s after-school resource coordinator, can see the program’s impact on the other families. Among girls in the program, the prevalence of overweight or obese categorization based on body mass index (BMI) dropped 6 percent. “If you put Flamin’ Hots on the table next to a banana,” McClinton said, “most of the kids who did Power-Up would go for the banana.” Plans are under way to implement Power-Up in other Chicago schools. About 12 percent of residents in Chicago’s South Side communities have diabetes, according to a 2006 study in the American Journal of Public Health. So care providers like Pamela Beauduy, APN, PNP, see the need every day for this kind of diabetes education. As a nurse practitioner on the Comer Children’s Hospital at the University of Chicago Pediatric Mobile Medical Unit, Beauduy conducts diabetes prevention counseling for at-risk children who have a BMI rating above 30 and for those who, because of their growth chart, are considered to be obese and at great risk for diabetes. “Believe it or not, most have never heard of BMI,” Beauduy said. The pediatric mobile unit serves more than 60 students each week at 20 schools on the South Side. “It speaks to the need for more education for children and parents.” That education has to consider the obstacles to proper eating and exercise habits, Beauduy said. Most of the pediatric mobile unit’s patients are low income and covered by Medicaid, if they have insurance at all. “It’s challenging,” Beauduy said, “because healthy foods are more expensive.” Uncontrolled diabetes leads to amputated limbs and blindness. A one-year pilot program that began in October 2010 through the Medical Center’s Urban Health Initiative (UHI)


allows diabetes patients at the Chicago Family Health Center in the Chicago East Side community to receive free treatment for diabetic retinopathy, a condition that can lead to blindness. Medical Center physicians also are taking more innovative approaches to helping low-income diabetes patients avoid those severe complications. During a one-month pilot study, 18 diabetes patients of the Medical Center’s Primary Care Group received an average of 220 text messages about their diabetes selfmanagement. Results showed that daily messages like “Take your medicine” or “What was your blood sugar reading today?” boosted the patients’ efficacy in managing their diabetes. The study’s leaders, third-year internal medicine resident Shantanu Nundy, MD, and Pritzker School of Medicine alumnus Jonathan Dick, MD ’10, hope to expand the study.

Juggling Diabetes with Other Life Issues On the South Side, where nearly one-third of the population lives below the federal poverty level, managing diabetes is often one problem on a list of many. Shirley Baker paused, with tears in her eyes, as Shelley Scott, RD, the nutrition educator at Access Community Health Network’s Booker Family Health Center, asked the group of adults in the Diabetes Empowerment Program about their challenges with the disease. “You all wouldn’t believe some of the things I’ve been through,” said Baker, 73, who was diagnosed with diabetes in 1997 and lives in the Grand Boulevard community, not far from the Medical Center. She had already been diagnosed with hypertension, arthritis and heart failure. As she tried to juggle the doctor appointments and dietary changes, her son was sentenced to prison. A fall required her to have brain surgery. Then, a granddaughter died in a drowning accident. “With all that going on, I just couldn’t eat right,” Baker said.

Marshall Chin, MD, and Monica Peek, MD, are leading an initiative on the South Side that is funded by a $3.5 million grant from the Merck Company Foundation and the National Institutes of Health. Photo by Bruce Powell

Health (NIH). Scott teaches the two-hour class along with Peek, who offers the clinical perspective on how diabetes patients can work with their physicians. “We say, ‘These are the options,’” Scott said, “and the patient decides with the doctor what will work best in his or her life.” Baker’s limited disability benefits only allow her to do what she can for the month, but the class has taught her to stay away from the most tempting sweets, how to read food labels and what to order in restaurants. “Look for words like grilled, broiled, sautéed, steamed,” Scott said to the group during a restaurant role-playing activity. “Tell them to bring the take-out box out with the food, so you can wrap half before you start eating.”

Finding What Works for Patients

“We say, ‘These are the options,’ and the patient decides with the doctor what will work best in his or her life.” — Shelley Scott, RD Add to that another obstacle: For most South Side residents, the nearest grocery store is twice as far as the nearest fast food restaurant, according to a 2006 study from Mari Gallagher Research and Consulting Group, a Chicago-based national think tank on food deserts. Trying to address the imbalance caused by food deserts, the Medical Center has sponsored seasonal farmers’ markets. Through the UHI program, University of Chicago researchers also have mapped 11 communities’ businesses and social services and provided that data to the public and online. Neighborhood leaders, like those in the Woodlawn and Auburn-Gresham communities, are using the data to attract mainstream grocery retailers to their areas. The Diabetes Empowerment Program classes are part of a larger initiative, “Improving Diabetes Care and Outcomes on the South Side of Chicago,” led by Monica Peek, MD, assistant professor of medicine, and Marshall Chin, MD, professor of medicine, and are funded by a $3.5 million grant from the Merck Company Foundation and the National Institutes of

Arshiya Baig, MD, has designed a similar diabetes education program that began in February with two churches in South Lawndale, a predominantly Mexican-American community on the city’s West Side. With funding from the NIH and the University of Chicago, Baig, assistant professor of medicine, will evaluate an eight-week class on exercise, nutrition and medical care with 100 patients, plus six months of follow-up. The program will give participants disposable cameras to document their lives with diabetes. The goal is to see the patients lower their blood sugar and cholesterol, as well as boost their medication adherence and knowledge about diabetes. These pilot education programs attempt to answer the question that the medical literature has not: What types of diabetes programs actually work in the real world to show better clinical outcomes? Peggy Hasenauer, RN, executive director of the university’s Kovler Diabetes Center, is looking to answer that same question for Medical Center patients. Kovler’s “Living Well with Diabetes” forum draws more than 250 patients to the Medical Center every March to learn about the latest research on diabetes management. As the 2011 event approaches, Hasenauer is forming a patient advisory panel that will help the Kovler Diabetes Center researchers understand which programs are most effective. “Health care providers spend a lot of time thinking about what patients want but not asking them,” Hasenauer said. “This is really a novel approach: testing ideas and asking people — even if they are not our patients — ‘What can we do to help?’” ■

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A M E D I C A L N A R R AT I V E

Kathy Hnilica, a patient since 1990, with Henry Finn, MD, professor of surgery at the Medical Center. Photo by Jason Smith

AGIANT LEAP How a physician jumped hurdles to save his patients’ legs By Barbara Rose

When Kathy Hnilica walks down a beach, she never fails to turn and look back over her shoulder at her tracks in the sand. “I see two footprints that are mine,” the 48-year-old said. “It’s something I don’t take for granted.” In 1990, when Hnilica was 27, she faced losing her right leg to a cancerous bone tumor. Then she met Henry Finn, MD, of the University of Chicago Medical Center. The Finn Knee, fabricated from titanium, cobalt chrome and high-density polyethylene, features an anatomical design.

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nilica was one of the first patients to receive what became known as the Finn Knee System, and her treatment over the next 20 years advanced Finn’s work with a modular rotatinghinge knee to help people with cancer, severe injuries, deformities and infection. Finn’s drive to help his patients, even when it meant going against conventional medical practice, contributed to advances that made limb salvage commonplace rather than amputation. “There were a lot of naysayers who Henry Finn, MD, examining Kathy Hnilica’s X-rays. The Finn Knee has been implanted in about 15,000 thought limb salvage shouldn’t be done patients. Photo by Jason Smith in cancer cases,” recalled Finn, chief of orthopaedic surgery at Weiss Memorial “Dr. Finn is a perfectionist with great Hospital, medical director of the University of Chicago Bone and Joint determination and drive. As a patient, Replacement Center at Weiss, and a University of Chicago Medical Center I couldn’t hope for better qualities in a professor of surgery. “Today, rarely does a patient accept an amputation.” doctor than these. I’m so grateful that he Patients also undergo fewer surgernever gave up on my case.” — Kathy Hnilica ies after an implant because of Finn’s pioneering work over the past quarter department of surgery and associate dean of graduate medcentury. The American Academy of Orthopaedic Surgeons ical education. cited the Finn Knee among the notable developments in the Since the early 1980s, Finn had been interested in saving specialty’s history in 2008, and the device is recognized as the limbs of patients whose bones and ligaments were too one of the 20th century’s most significant orthopaedic developments in the millennium edition of Orthopedics Today. badly damaged for conventional knee replacements. Historically, hinged knees for such difficult cases had high About 15,000 patients worldwide have benefited from the Finn Knee, according to medical manufacturer Biomet, Inc., failure rates within the first two years, so doctors had stopped using them and the technology failed to evolve. based in Warsaw, Indiana. “There were multiple early complications, including mechanThese accolades are impressive but not nearly as remarkical failure, bearing surface wear and debris, chronic joint able to the patient as saving his or her leg. swelling and fracture of adjacent bones, pain, instability and in“He changed my life,” Hnilica said. “I’m honored to have him as my doctor. I feel like I’m a little part of the history he’s made.” fection,” Finn recalled. “They had such a poor track record that doctors became ‘hinge phobic.’” Aerobics Class Leads to Diagnosis of Tumor Finn was different: “I felt restless and discontented until It wasn’t her knee that initially sent Hnilica to another I could fi nd a solution.” doctor in early 1990, but a slight hand tremor and the feelHe began by modifying existing implants. “I would have ing that she was “always off a beat” in aerobics class, she to order a custom device and go into the operating room and recalls. An energetic 27-year-old, she regularly worked 10- insert it ‘freehand,’ not knowing whether it was going to go and 12-hour shifts as a McDonald’s manager in the Atlanta as planned,” he recalled. “I had to do this in spite of older area, where she lived. doctors saying, ‘This has been tried and failed too many The physician ordered a knee X-ray to confi rm his times. You can’t do it better.’” arthritis diagnosis. Instead the X-ray revealed a large tumor His breakthrough came about 18 months into his pracin her femur, or thighbone, above her knee. She recalled tice, in 1987, when a sudden flash of insight awoke him from being told that she would lose her leg. The thought of it still a sound sleep at 3 a.m. He got up and hurried downstairs to makes her shiver. his office to diagram what became the Finn Knee. Then he “Isn’t there anything you can do?” she asked. Her doc- faxed his drawings to an engineer who redrew them with tor told her about surgeons doing experimental work at the manufacturing specifications and sent them to Biomet, an University of Chicago Medical Center. She had grown up in orthopaedic manufacturer. the Chicago area, and her parents lived there. By 1991, he had sufficient data from surgeries with custom “I’m going home,” she decided at once. prototype implants to win Federal Drug Administration Lying on a gurney awaiting her biopsy surgery at the approval for the new device. Medical Center, Hnilica recalls looking down at her leg, bendThe Finn Knee, fabricated from titanium, cobalt chrome ing her knee and wondering, “Is this the last time I’m ever and high-density polyethylene, featured a more anatomical going to be able to do this?” design. Finn had figured out how to position the axle anatomiThe biopsy revealed a low-grade osteosarcoma, or Stage cally while also shifting the weight-bearing function throughout IA cancer. She was scheduled for surgery with Finn and the device. The weight no longer centered on the axle bushing; Michael Simon, MD, now vice chair of the Medical Center’s it was shared with a bearing at the tibia, or shinbone. His design

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A M E D I C A L N A R R AT I V E provided broader surface contact with polyethylene throughout “This is an impressive example of how patient care is the range of motion, resulting in better tracking of the patella, improved through innovative design and technology that or kneecap, and better long-term durability. results from the creativity of surgeons working in conjuncThe device was modular, so surgeons could build exactly tion with industry in the most positive way,” said Terrance what they needed in the operating room. His system also incor- Peabody, MD, the Simon and Kalt Families Professor of porated tools, including contemporary instrumentation and Orthopaedic Surgery and chief of the Section of Orthopaedic trial components, so that implantation was more like routine Surgery and Rehabilitation Medicine at the Medical Center. surgery. “It became user friendly,” Finn explained. “A single patient’s need was the impetus behind the creation Biomet began marketing the Finn Knee about a year after of a tool that has proven to benefit a large number of indiHnilica underwent her first surgery in 1990. The surgical team viduals with similar problems. It transformed the care of removed the tumor and replaced 7 inches of her diseased femur patients facing amputation.” with a custom cemented Finn Knee prototype. She regained full A Patient-Physician Relationship Built Over function of her leg, and her cancer did not return. Two Decades By 1991, the cemented femoral component failed and was Hnilica counts about 20 surgeries since her cancer diagnosis, revised with a cadaver bone attached to a new Finn Knee. Shortly after, Hnilica developed a serious complication. She began run- including revision of a failed cemented component. Surgeons no longer rely on cement. Instead, metal surfaces are made ning high fevers, and tests revealed her thigh and knee were porous with interstices, or tiny holes, into which a patient’s infected with a rare fungal disease, Aspergillus fumigatus. There were no reported instances of treating such a complication. own bone cells grow to form a biological lock. “Dr. Finn is a perfectionist with great determination and Numerous physicians recommended amputation, but Finn wantdrive,” Hnilica said. “As a patient, I couldn’t hope for better ed to try to save her limb. “I felt we shouldn’t impose an amputation on her,” Finn re- qualities in a doctor than these. I’m so grateful that he never gave up on my case.” called. “That’s how we improve lives and make progress.” Today, Hnilica works long and sometimes unpredictable Hnilica recalls Finn explaining, “‘You may go through multihours as an assistant to the board of directors for a Fortune ple surgeries and lose your leg anyway.’ It was kind of scary.” In a series of four surgeries from September to November 100 company in the Chicago area, where she resettled perma1994, Finn treated the infection using a cement “spacer” impreg- nently to be close to family and physicians. She bikes, swims, nated with antibiotics in place of the end of her femur and knee, bowls, gardens and does water aerobics. An inveterate traveler, she’s gone white-water rafting and hiked up Dunn’s River then re-implanted a Finn Knee. Hnilica’s leg was in a cast from Falls in Jamaica, a 600-foot climb. thigh to ankle, stabilized by a metal rod encased in concrete. It “I can’t imagine what my life would have been like all these was six months before she knew she was out of the woods. years without my leg,” she said. “It was very hard going through Her successful treatment and follow-up after five years was reported in 2001 in the Journal of Arthroplasty (Vol. 16, No. all the surgeries and physical therapy, but now I appreciate how precious walking is. It was a gift.” ■ 4). It is the only known such case and has drawn attention from Finn’s colleagues.

Wider Use of the Finn Knee Allows Vietnam Veteran to Walk Pain Free By Barbara Rose ver the years, Henry Finn, MD, discovered wider uses for his implants. “As we started to use them for cancer, we found many patients could benefit,” he said. “There are many situations where no other device can replace segments of bone and ligaments with any clinical utility at all.” Louis Olguin, a retired truck Louis Olguin received a Finn Knee driver and father of three, years after an accident in the Marine had reached the limits of his Corps. Photo by David Christophe r endurance in 1990 after years of crippling pain and 15 surgeries. His disability was related to a 1973 accident during a Marine Corps exercise at a United States training camp, during which he tore all the ligaments in his left knee and severely injured his right knee. When he heard about Finn’s work in January 1990, shortly after his youngest son was born, he decided to risk a prototype knee replacement. “‘I have to do something,’” he recalled telling his wife. “‘I can’t live like this.’ I think we prayed, then I cried.”

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“When I had that surgery, Dr. Finn said, ‘You’ll be walking in three days,’” Olguin recalled. “Here I was, all those years, in a cast two or three months at a time. With Dr. Finn, therapy came the next day. The second day I’m up on crutches, putting light pressure on my leg.” The best part was Olguin’s realization that his crippling pain was gone. Finn, chief of orthopaedic surgery at Weiss Memorial Hospital, medical director of the University of Chicago Bone and Joint Replacement Center at Weiss, and a University of Chicago Medical Center professor of surgery, replaced Olguin’s right knee in 1995. In July 2010, he placed new parts in the left implant, which is expected to last another 20 years. “Crutches, wheelchairs, canes — he took me off all that,” said Olguin, 57. “He saved my life. He’s my guardian angel.” Since Finn’s early implants, he has led more than 10,000 surgeries. His work was endorsed in 1999 by an independent study at a University of Chicago gait laboratory. The study found that younger patients with Finn Knees walked and climbed stairs in a “near normal manner.” “We now do total femur replacements,” Finn said. “Everything above and below the joint has evolved. The design of the knee itself hasn’t changed. We got it right the first time.”


A D VA N C E S I N T E C H N O L O G Y

Minimally invasive technology allows physicians to map patients’ lungs, detect tumors and take bronchial biopsies without ever using a scalpel

By Mary Beth Sammons and Cheryl L. Reed

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n March 2005, after traveling to San Francisco to witness the birth of his fi rst grandson, Robert Krull returned to his Chicago law practice with an encroaching cold. “The cold hung on and I went to an urgent-care center to ask for antibiotics,” said Krull, 66, of Long Beach, Indiana. A chest X-ray revealed a dark spot and, given Krull’s heavy smoking and family medical history, raised the possibility of a more serious illness. That led him to the University of Chicago Medical Center, where physicians discovered that cancer and emphysema had taken up residence in Krull’s lungs. A team of physicians successfully treated Krull, fi rst with surgery, then chemotherapy. After recovery, Krull returned every six months to the Medical Center for CT scans to detect abnormalities at the earliest stages, when treatment has the greatest success. Unfortunately, a few years after his surgery, Krull’s scans showed a mysterious white nodule on his right lung. “I was so angry to think the cancer had come back,” Krull said. Among his fears was another round of biopsies and surgeries. But his pulmonologist, Kyle Hogarth, MD, thought he ABOVE

could discover what was on Krull’s scans without ever using a scalpel. Since 2004, Hogarth, co-director of the Upper Aerodigestive Cancer Risk Clinic and director of bronchoscopy, had been using an arsenal of minimally invasive technology tools to screen patients for the earliest signs of lung cancer. Lung cancer strikes 196,000 people each year and kills more than 159,000 — making it one of the most mortal cancers. More people die of lung cancer than from colorectal, breast, pancreatic and prostate cancers combined. Most patients discover their disease too late for treatment — more than half of lung cancers are diagnosed at an advanced stage — and 85 percent die from it, making early detection critical. The five-year survival rate for Stage I lung cancer is 60 to 80 percent, compared with less than 5 percent for Stage IV, according to the American Cancer Society. “For every other major cancer killer, there is a greater sophistication of screening tools, but for lung cancer there has been very little for early detection until recently,” Hogarth said. “We’re starting to have some success stories.” The Medical Center’s advanced diagnostic methods include fluorescence bronchoscopy, a technique that detects cancerous tissue before it spreads beyond the airways of the lungs. Another

An X-ray of lungs.

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A D VA N C E S I N T E C H N O L O G Y for screening, as are survivors of esophageal and head/neck cancer. Krull had four strikes against him: He had battled lung cancer previously, once was a heavy smoker, had emphysema, and had a CT scan with a questionable mass on his right lung. Normally Krull would have needed an extensive surgery to diagnose the lump. But Hogarth thought Krull was a prime candidate for virtual bronchoscopy, also known by its trademark name, superDimension iLogic System, a medical technology that in application evokes many similarities to video games. The results are a computerized three-dimensional map of a patient’s lungs individualized from the patient’s CT scan. A patient lies on an electromagnetic panel that charts the patient’s lungs. Then the physician threads a scope through the mouth and into the lungs. The scope has a sensor-equipped catheter that picks up signals from the panel underneath the patient. These signals drive the bronchial scope forward until it is too big to navigate the tight area of the lungs. Then the physician directs a smaller inner rod, known as the working channel — too small to be equipped with a camera — through the tiniest paths using the virtual view of the lungs projected on a plasma screen. Kyle Hogarth, MD, holds a bronchoscope that uses new technology to reach the far interiors Within days of his CT scan, Krull checked of the lungs. Photo by Bruce Powell into the Medical Center for the half-day, outpatient procedure. Under anesthesia and “Think of the virtual bronchoscopy as a GPS system for your unconscious, Krull lay on a gurney with a small funnel in his mouth. Hogarth threaded a probe lungs. I put this probe through the bronchoscope, and as that looks like a narrow rubber tube with a I start to move the device, it is mapping the virtual lung to light on the end into Krull’s air passages and deep into his lungs. Hogarth manipulated the the real one, merging the two.” — Kyle Hogarth, MD device, pushing the scope past the main airways and into Krull’s bronchial airways that is virtual bronchoscopy, an electromagnetic navigation system branch out like limbs of a tree. Hogarth found the suspicious that uses 3-D imaging to help physicians take lung biopsies, lesion at the end of one branch, far into the lung, and, using through nonsurgical means, of areas that appear abnormal on small forceps attached to the inner rod, collected a sample. a CT scan. Hogarth was one of the first physicians in Illinois “Think of the virtual bronchoscopy as a GPS system to adopt this revolutionary technology. for your lungs,” Hogarth said. “I put this probe through the bronchoscope, and as I start to move the device, it is Fighting Cancer mapping the virtual lung to the real one, merging the two. Before It Attacks I use this map to move through the airways toward the Early detection testing is lesion.” In actuality, it looked like Hogarth was playing a vital for lung cancer survivideo game on the plasma screen mounted on the hospital vors like Krull, who are at wall. The mysterious lesion in Krull’s CT scan appeared high risk. Other risk factors as a bright green dot on the screen. Within 30 minutes, for screening include decreased Hogarth was done. lung function from conditions “I was out by noon the same day and played golf the next,” such as chronic obstructive Krull said. pulmonary disease (COPD), Fortunately, the bright green dot on Krull’s virtual bronor emphysema, and a smokchoscopy turned out not to be cancer but a fungal infection, ing history of 20 years or more. which dissipated on its own over time, Krull said. Patient Robert Krull was able People who have been exposed Krull was relieved that tracking the health of his lungs to avoid surgery to collect a to asbestos or silica dust and in the future would not be as hard as in the past. Should bronchial biopsy by the use of other occupational lung toxthere be another shadowy CT scan, Krull knew it would not less invasive technology. Photo by Bruce Powell ins are also good candidates necessarily require surgery. TM

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Early Leader in CT Scans As in Krull’s case, low-dose CT scans play an important role in the Medical Center’s screening program. It was the mysterious shadow on Krull’s CT scan that prompted Hogarth to initiate the virtual bronchoscopy. CT scans recently have garnered more attention; a National Cancer Institute (NCI) study released in November showed that CT scans reduce deaths from lung cancer by 20 percent (compared to traditional chest X-rays) by detecting cancers at relatively early stages. The study is significant because it is one of the first times that a clear benefit has been shown for any form of lung cancer screening, Hogarth said. Results were based on the premise that finding tumors early allows patients to be treated before the cancer becomes deadly. “Because of the smoking stigma, there has generally been less funding, action and awareness of lung cancer,” Hogarth said. The newest CT machines are able to obtain detailed crosssectional images of entire organs and not just partial views, as with the older scanners. Organs can be viewed from any angle, and the speed of the new scanners means radiation exposure is significantly reduced. The Medical Center’s 256-slice CT machine produces scans within seconds, four times the capacity of previous generations of scanners. A scan, head to toe, can be acquired in 10 seconds. Because the data is processed more quickly, it translates into higher-quality scans. Previously, when a CT scan depicted a suspicious lesion, there were fewer options for diagnosis and treatment. In many cases, it required sticking a needle through the chest for a biopsy or surgery to remove the suspicious growth. For patients with enlarged lymph nodes or nodules, like Krull, surgery was often required to sample the abnormalities. But now physicians can use less invasive scopes. Since Krull’s treatment, Hogarth has added a new instrument to his high-tech arsenal called Endobronchial Ultrasound (EBUS), which allows him to sample tissues from beyond the confi nes of the endobronchial tree, such as enlarged lymph nodes. The EBUS scope has an ultrasound on its end, which allows Hogarth to see through the bronchial walls into the enlarged lymph nodes and take samples. All of this is done as an outpatient with no scars — and no scalpels.

to conventional bronchoscopy doubled the number of lesions identified, compared to standard bronchoscopy. Another way to boost the dynamics of bronchoscopy is through a technology called narrow-band imaging. Pre-cancers and cancers usually have abnormal growths of blood vessels leading to them. Narrow-band imaging identifies lesions not seen in a regular bronchoscope using two wavelengths of light to highlight the blood vessels and make them easier for the physician to see. These new technologies are useful not just episodically, when a CT scan finds something suspicious, but in tracking the health of a lung cancer survivor, like Krull. In December 2010, six years after his cancer treatment, Krull had his routine CT scan. This time, the results were clear. But because of his former smoking and medical history, Hogarth followed up with the autofluorescence scope and the narrow-band imaging. “There were no abnormalities seen at all,” Hogarth said. “These technologies allow us to identify someone who has a definitive risk for lung cancer and to say, ‘Let’s go in and destroy it.’ Quite literally, we’re nipping cancer in the bud.” ■ Ruth Carol contributed to this report. For more information about the lung cancer screening program, please call 773-702-9660.

Finding Pre-Cancers, Moving to Prevention Borrowing from the lexicon of video gaming, bronchoscopy also has the ability to “power up” by adding fluorescent light to detect lesions at the pre-cancerous phase — when the lesion is just a few cells in thickness. This “autofluorescence capability” allows pre-cancerous tissues to appear in a different color than the healthy tissue. Despite the success of most CT scans in finding abnormalities, they can still miss small pre-cancers starting within the airways of the lungs, but an autofluorescence scope allows physicians to detect and remove these lesions before they have any opportunity to grow or invade lung tissue. “We can sometimes find lesions invisible to the naked eye,” Hogarth said. “The analogy is a colonoscopy that allows you to remove a polyp which, if left alone, could become a cancer. We’re eliminating the pre-cancers.” Initial results from a study of more than 3,000 patients at multiple medical centers found that adding autofluorescence

Kyle Hogarth, MD, using the lung mapping software to help locate the lesions that need to be sampled in a patient. Photo by Bruce Powell

“We can sometimes find lesions invisible to the naked eye. The analogy is a colonoscopy that allows you to remove a polyp which, if left alone, could become a cancer. We’re eliminating the pre-cancers.” — Kyle Hogarth, MD

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M E D I C I N E O F F T H E M I D WAY

Scott Eggener, MD, checking on a patient following surgery at Panzi Hospital in Bukavu, Democratic Republic of the Congo. Photo by Danielle Shapiro

For the Global Good As they volunteer their skills in foreign, often impoverished locations, Medical Center physicians rediscover their passion for practicing medicine By Cheryl L. Reed

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avid Gozal, MD, has the manner of a multinational traveler. He is fluent in six languages, runs a major academic children’s hospital, spends several weeks every year volunteering in Africa and has built pediatric sleep research programs all over the world. But Gozal’s immersion into global health was hardly glamorous. For three months in 1976, Gozal, then a medical student at Hebrew University, led a mule loaded with medical equipment through the Iranian mountains of Kurdistan, traveling from one village to another and treating people by consulting his medical textbooks. “It was a spectacular human experience,” said Gozal, MD, chief of pediatrics at Comer Children’s Hospital at the University of Chicago. “I got to know a whole group of people with whom I could barely communicate but who were kind, hospitable and made me feel welcome as, I hope, I contributed in one way or another to their well-being.” Traveling to remote parts of the world to practice medicine among the world’s neediest populations is a growing practice among University of Chicago Medical Center physicians and an escalating interest among medical students and residents. Each year, hundreds of faculty and staff take vacation time to travel to foreign countries where they practice medical volunteerism. Some of that work is part of official research programs, but most physicians volunteer their services through charities and non-

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governmental agencies. Physicians say it allows them to practice medicine in its purest form, without insurance and paperwork, and to provide medical care in countries where their intervention can mean the difference between life and death in some cases, and the chance at a normal life in others. Though the hours are long and the living conditions spartan, physicians say the experience rejuvenates their commitment to medicine. “It’s one week of pure good,” explained David Song, MD, vice chairman of the Department of Surgery, chief of the Section of Plastic and Reconstructive Surgery and director of the Resident Training Program. Twice a year, Song takes a team from the Medical Center to the Dominican Republic to perform ear, cleft lip and palate reconstructions as well as surgeries for burns. “There’s no other motive than to practice medicine as it should be. Residents often tell me that this is the highlight of their entire residency.” Song has been making the annual trips since 2000 and is on the board of Medical Aid for Children in Latin America. His group goes to the same hospital in Santo Domingo and maintains relationships with families for decades, often operating on brothers and sisters and other members of their families. “The personal satisfaction that we all get out of it is indescribable,” Song said. “To see a little child who is deemed by the village as possessed by a demon brought back into society after a 1½-hour lip repair, it’s hard to put into words how that makes you feel.”


Song’s group works for 15 to 16 hours a day. There are no fancy golf courses or resorts. “In the States, there’s so much infrastructure and impediments that we have to deal with — the business side of medicine — that often people lose focus on why they went into medicine in the first place. Going down to the Dominican Republic twice a year clearly helps you refocus and reenergize.” Many physicians make medical volunteerism part of their lifestyle. For some, it is an interest cultivated early in their careers. For others, it is a way to give back to their country of origin. For those who grew up outside the United States and have traveled extensively, it seems like a natural extension of their medical practice. That was certainly the case for Gozal, who grew up in Spain, Portugal, France and England. He was in medical school in Jerusalem when he signed up to volunteer with ophthalmologists at a Tehran, Iran, hospital: “I thought at the time that I wanted to do surgery, so it sounded like a fun adventure.” But when he got to Tehran, there wasn’t much for him to do. So when he was offered an opportunity to do medical work in a remote area of the country, he eagerly agreed. He was told he would be working with a physician, but it turned out he was the only one with any medical expertise, and what he did know was limited. “I was great at textbook knowledge,” he said, humbly. His most taxing treatment was performing an appendectomy on a 10-year-old whose appendix was about to burst. Fortunately, Gozal’s medical books covered the procedure in detail. “That was definitely the most stressful thing that I did,” he recalled, with obvious relief. “The kid survived and I survived, too, luckily.” Like many young medical students and residents who are exposed to practicing in foreign countries early in their careers, Gozal made medical volunteering a part of his practice. Since those days in the mountains, he has volunteered extensively in Africa, mostly at a center in Yaoundé, Cameroon, where he helped establish a rural health care program, a TB clinic and an exercise physiology research laboratory. He continues to volunteer at the center, spending two weeks to a month there every other year. It is one of many global programs to which Gozal devotes his free time. “You get a sense of belonging with the world. This is what drives me to do this,” Gozal explained. “In all of us, there’s what I call the ‘kernel of humanity.’ In some, it’s very well kept, and in others, it’s more actively engaged. Whether it’s through research or assisting in one way or another, I think all of us at the university have that kernel.”

“In Honduras, it was like a county hospital. Patients were lined up from 7 a.m. until midnight every day, and it was just surgery, surgery, surgery,” Eggener recalled. “At the hospital in Casablanca, it was more of an exchange. They had decent urologists and they showed us how they did some surgeries and we showed them how we did some.” “It was a spectacular During medical school, human experience. I got Eggener was part of a “travelto know a whole group ing scholars” program in which of people with whom I he spent six months doing research could barely communicate overseas at Hebrew University but who were kind, hospin Israel. Through a Palestinianitable and made me feel American friend, he was first welcome as, I hope, I introduced to the Palestinian tercontributed in one way or ritories, and it initiated a practice another to their well-being.” he continues by traveling to the David Gozal, MD, began Middle East and performing surhis medical volunteerism geries for Palestinians. in Iran while he was still in “It’s addicting,” he said. “If medical school. you get to people early enough in their training, it will become part of their lifestyle. I’m the perfect example. I did it during residency, and I’ve tried my best to make it a part of my life. I come back and tell my wife that in an ideal world, I’d spend half my time overseas and half my time here. But it’s just not tenable, particularly with two little kids and a wife. I just can’t be away all the time.” Initially, Eggener’s work was mostly with Palestinian children, repairing congenital malformations like hypospadias, in which the urethra is not completely formed and urine does not come out at the penile tip. He also corrects undescended testicles and vesicoureteral reflux, in which the urine refluxes

Early Exposure For some physicians, like Gozal, that kernel comes from early exposure to other cultures. But for many American-born physicians, an international experience in medical school or during a medical residency broadens their understanding of world health and compels them to make global health part of their lifestyle. Scott Eggener, MD, assistant professor of surgery, grew up in a Chicago suburb and attended the University of Illinois for his undergraduate degree. After medical school at Stanford, Eggener and his wife collected medical goods and delivered them to Burma — now known as Myanmar. Then, early in his surgical residency at Northwestern University, he went to Cuba. Later, he went to Honduras and then Morocco.

David Song, MD, along with nurse volunteers in the Dominican Republic with a child whose cleft lip was repaired. Photo courtesy of David Song, MD

“It’s one week of pure good. There’s no other motive than to practice medicine as it should be. Residents often tell me that this is the highlight of their entire residency.” — David Song, MD

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M E D I C I N E O F F T H E M I D WAY into the kidneys. Twice, he’s been to the Gaza Strip, but because of security, he’s been going annually to the West Bank, where the urological surgeries are coordinated through the Palestinian Children’s Relief Fund and the International Volunteers in Urology. In the past few years, Eggener has been performing surgery on adult cancer patients “It’s a sharing experience. in Palestine and organizing I think it’s a lot more educational conferences in condifficult to do in isolation.” junction with the Palestinian Greg Bales, MD, felt more Urological Society. comfortable volunteering “I’m proudly Jewish. I support with his colleague, Scott Israel, but recognize that both Eggener, MD, in the sides [Palestinians and Israelis] Democratic Republic of the have made grave errors,” he exCongo, where he gave injured plained. “I look at my efforts as women the medical attention extending a little olive branch, to their remote villages lacked. show them that people from America, and even some Jewish people, want to help.” In the fall of 2009, a friend from medical school approached Eggener about going to the Congo to do female urological repairs. Eggener asked his colleague Greg Bales, MD, who specializes in pelvic floor surgeries at the Medical Center, to join him. At 45, Bales had never done volunteer medicine overseas, but when Eggener asked, he agreed to go. When they arrived at the Panzi Hospital in Bukavu, capital city of the South Kivu province of the Democratic Republic of the Congo, they were confronted by hordes of patients who had experienced obstetric trauma. “They’re literally sitting on a cardboard slab outside the hospital as their urine pours out. They smell awful; their legs are soaked with urine; they have skin breakdowns,” said Eggener. “It was horrific to see.” Many of the women had lived in remote villages and tried to give birth, but their pelvises were too small, so they started walking. But the nearest hospital is often five to seven days away. “It’s very sad,” Bales explained. “The pressure from the baby’s head makes them lose their bladder, essentially. It’s really a horrific injury and one we rarely see in the States. The baby’s

dead and they have an abnormal hole between the bladder and the vagina and urine pours out uncontrollably from the vagina.” While physicians at the hospital were skilled enough to fix these fistulas, the women remained incontinent because their sphincter muscles weren’t working. So Bales and Eggener largely performed sphincter repair surgery during their time there. Some of the patients’ injuries were caused by sexual assault by the military men. In some cases, the damage was so bad that the surgeons had to divert the urine into a urostomy, a bag that collects urine outside the body. “Another problem in these countries is that when the women lose control of their urine, their husbands completely leave them,” Eggener explained. “And they have nowhere to go. They’re abandoned by their villages. So the hospital serves as a shelter for these women.” Bales added: “I think seeing that was most emotionally devastating. As doctors, we’re used to dealing with anatomy and physiology, not all the stories. Can you imagine just being completely ostracized, with a baby and absolutely zero support? So part of the doctor’s role is to, hopefully, reintroduce the women back to a normal living situation, so they could potentially get back to their villages.”

Influence Back Home

When Bales returned to his Medical Center practice, he noticed that he had a different perspective: “I just don’t get upset. And you know, if I do have a bad day, I remember Scott and me in this operating room with flies and the power going out and these two patients maybe 6 feet from each other.” Bales said he would have gotten into overseas medical volunteerism had he had the opportunity earlier. “I wouldn’t have done it if a colleague, someone I feel very comfortable with, hadn’t approached me. It’s a sharing experience. I think it’s a lot more difficult to do in isolation.” The international fervor seems to be spreading in their urology department. Though he is from Israel and has been introducing minimally invasive laparoscopic/robotic urologic surgery in his home country, Arieh Shalhav, MD, chief of the Section of Urology, had never done medical volunteerism before Gary Steinberg, MD, director of urologic oncology at the Medical Center, asked Shalhav to accompany him to Vietnam in June 2009. Steinberg had been volunteering in Vietnam for five years, teaching and performing bladder and kidney cancer surgery at Bin Dahn Surgical Hospital and Ho Chi Minh Cancer Center. At fi rst, Shalhav wasn’t sure how much help he’d be to Steinberg in Vietnam. “My focus is minimally invasive laparoscopic surgery, a technologydependent specialty,” Shalhav explained. “But when I was there, it was remarkable how the Vietnamese urologic surgeons were hungry for advances and knowledge. It defi nitely inspired me to involve our residents in volunteering overseas.” Eggener remembered Shalhav’s excitement: “He came back so energized about doing oversees volunteer work. And he said: ‘I want this to be part of our program. I want our residents to go. I want donors to raise funds to make Aisha Sethi, MD, provided dermatology care to flood refugees at the mobile skin clinic near it part of our curriculum.’” Multan in Pakistan in January 2011. Photo courtesy of Aisha Sethi, MD

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It was only months after Bales returned from the Congo that he saw an opportunity to do some international volunteerism in the United States. A physician he knew in Northwest Indiana returned from rescue efforts in earthquake-torn Haiti and told Bales about a girl who had a severe urologic deformity.

“It’s addicting. If you get to people early enough in their training, it will become part of their lifestyle.... In an ideal world, I’d spend half my time overseas and half my time here.” — Scott Eggener, MD “I was a little emboldened by what I’d done with Scott in the Congo,” Bales admitted. He teamed up with pediatric specialist Mohan Gundeti, MD, and performed the necessary surgery in Munster, Indiana. “My radar after the Congo was up a bit. Once you get kind of hooked, you don’t always have to go to another country, but it’s an opportunity to provide care to the Third World.” Eggener, a member of the university’s Global Health Initiative, says he strongly favors standardizing and formalizing global health as part of the medical curriculum at the Pritzker School of Medicine. “I think our job as a medical center and large academic organization is to get this across people’s minds, so that those who do have an interest can jump at the opportunity.”

Giving Back to Countries of Origin For physicians who are immigrants to the United States, volunteering overseas is a way to maintain ties with their home countries. That’s how Valluvan Jeevanandam, MD, chief of cardiac and thoracic surgery, who was born in Tuticorin, India, approaches his volunteerism in South India. Each year since 1993, Jeevanandam has been traveling to Sri Sathya Sai Super Specialty Hospital, in Puttaparthi, India, to do heart surgery on the “poorest of the poor.” The hospital is completely free and is run from a trust established by the spiritual guru Sathya Sai Baba, who runs a nearby ashram. Teams from all over the world come to the hospital to do specialty surgery, including cardiac surgery and neurosurgery. The hospital has a waiting list of thousands who need heart surgery, but the hospital can only do about 1,000 cases a year, Jeevanandam said. His role is to teach and mentor staff surgeons on how to perform difficult surgeries. “As I got involved with the hospital, I got involved with Sai Baba as well, and that altered my entire thinking about how to live life,” he said. “So the experience has exposed me to the less fortunate and helped me grow spiritually while I’ve helped them with their cardiac program and training.” Jeevanandam says that because the treatment is free, a different relationship is established between physician and patient: “You’ve taken money totally out of the equation, and you’re really helping. When you do something for free and you help someone, the gratitude you see in their eyes and their attitude is just very uplifting.” Though he works 12- to 14-hour days in India and stays in a tiny room with a cot at the ashram, Jeevanandam says he feels refreshed and recharged when he returns to the Medical Center. “I’m actually energetic. It’s like a great vacation for me. I’m really happy doing it, and maybe it gives me as much pleasure or more than what I contribute over there.”

Seeing the great need in their home country is one of the reasons that Olufunmilayo “Funmi” Olopade, MD, FACP, the Walter L. Palmer Distinguished Service Professor of Medicine and Human Genetics and associate dean for global health, and her husband, Christopher ’Sola Olopade, MD, professor of medicine and clinical director of the Global Health Initiative, have continued to practice medicine in Nigeria. Funmi Olopade has been doing research on how breast cancer is treated in Nigeria, while ’Sola Olopade has conducted asthma research and outreach campaigns to reduce indoor air pollution in rural villages. He educates “It was remarkable how the Vietnamese urologic Nigerians about the health risk surgeons were hungry of using biomass fuel for cookfor advances and ing and provides alternatives, knowledge.” including safe indoor stoves. Arieh Shalhav, MD, volunteered More than 2 million women and in the summer of 2009 to teach children die around the world and perform bladder and kideach year from indoor pollution. ney cancer surgery in Vietnam. Through their international research, the two physicians have seen the need to create a more organized approach for scholarly work in global health at the university. Both were instrumental in establishing the Global Health Initiative, which is functioning as an interdisciplinary academic home for students, trainees and faculty who are interested in developing sustain- “The gratitude you see in their eyes and their attiable solutions locally and tude is just very uplifting.” globally. (See accompanying Valluvan Jeevanandam, MD, article on page 26.) has taught and mentored “The Global Health Initiative surgeons in India for nearly exists so that we’re not just two decades. responding in 100 different ways to international emergencies,” Funmi Olopade explained. “We’re also being strategic in developing long-term partnerships that will really support global development.” Funmi Olopade frequently takes colleagues, students and researchers to Nigeria. Her discoveries about breast cancer in Africa have informed her genetic “We’re also being strategic in developing long-term oncology work at the Medical partnerships that will Center. “What I tell people on the really support global South Side is that we’re not going development.” to know anything about your anOlufunmilayo “Funmi” cestry, about your breast cancer, Olopade, MD, FACP, has until we study breast cancer in been conducting research Africa. For the longest time in on how breast cancer is this country, most of the research treated in Nigeria. focused on the majority of the population, not the minority.”

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M E D I C I N E O F F T H E M I D WAY International Research Requires More Rigor Doing research, even when funded by the National Institutes of Health (NIH), is very difficult in Third World countries. The living conditions are often spare. Physicians and scientists are exposed to a variety of diseases and infections. And then there are the language and culture barriers as well as local bureaucracies that have to be penetrated. Habibul Ahsan, MD, director of the Center for Cancer Epidemiology and Prevention at the Medical Center, has been running two research projects in Bangladesh for the past decade. Health Effects of Arsenic Longitudinal Study (HEALS) and Bangladesh Vitamin E and Selenium Trial (BEST) both study the health effects of arsenic that has naturally contaminated drinking water supplies in that country. More than 100 million people in Bangladesh have been exposed to arsenic contamination. Ahsan’s research has shown that one in every four “Our students now are deaths may be related to arsevery fortunate because nic poisoning and the overall they have places all over cancer burden in the population the world where they can has doubled as a result of the go for meaningful clinical drinking water contamination. experience.” Much of his research is potenChristopher ’Sola Olopade, tially applicable to rural areas of MD, is clinical director of the the United States, where an estiGlobal Health Initiative, which mated 17 million people drink brings students, residents and water containing arsenic. researchers abroad. Ahsan, who grew up in Bangladesh, launched his ambi-

tious project in 2000. He and his colleagues established a clinic in Bangladesh that diagnoses and treats about 200 patients a day. These diagnoses, in turn, inform his research, funded by the NIH, Columbia University and the University of Chicago. Students and researchers from all over the world come to the facility to conduct research studies. Though he now has a three-story medical facility with the latest diagnostics and laboratories and a local staff of more than 250, that wasn’t always the case. “It took time and we had to build trust in the local community, with the government and nongovernmental organizations,” Ahsan said. After all, it was an international agency, UNICEF, that helped lead a mass campaign in the 1970s to get people to change from using surface water to groundwater for drinking. The campaign was successful — 95 percent of the population got their drinking water from underground — but more than 20 years later, scientists discovered that the well-intentioned plan had backfired: The groundwater was contaminated with arsenic. Ahsan and his staff members have traveled by car, foot and boat (during the rainy season) to reach the remote villages where they tested water and gathered blood and urine samples. He has suffered from tropical allergies, had bacteria and respiratory infections and once was hospitalized for typhoid. “Every step, you have to face extra hurdles,” he explained. “Unless you’re willing to make the sacrifice, you can’t do this. Many people attempt it, but when they face the hurdles, they back off or curtail the scope. So that’s why we don’t see as much global health work as we otherwise would have. I’m not required to work in Bangladesh. I’m equally successful doing work in the United States without all these additional hardships and hassles.” Each year, Ahsan takes students to Bangladesh to work on various research projects. Half drop out or lose interest in continuing. “Once they see all the extra difficulty, they’re

Giving Structure to Global Medicine The Global Health Initiative takes the Medical Center and Pritzker abroad By Cheryl L. Reed

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Through the Global Health Initiative, the University of Chicago Medical Center is building upon its students’ and faculty’s increasing interest in practicing global medicine. Nearly 70 percent of students at the Pritzker School of Medicine say they want an international experience, while hundreds of faculty and staff are already involved in informal medical volunteerism, from repairing cleft palates in the Dominican Republic to running albinism clinics in Malawi to performing heart bypass surgery in a remote desert of India. The University of Chicago and the Medical Center want to tap into all that goodwill and design more strategic programs that would involve

“The Global Health Initiative is all about developing an interdisciplinary approach to solve problems of the world,” said Olufunmilayo “Funmi” Olopade, MD, FACP, the Walter L. Palmer Distinguished Service Professor of Medicine and Human Genetics and associate dean for global health. “It’s good to go and do medical missionary work, but what are you leaving behind? Can you teach people to fish instead of giving them fish? What we are asking people to do is consider a long-term partnership. We’re asking how we can engage people in a manner that they’ll be able to help their societies in a way that’s actually transformative.”

tutions have long led programs for international and public health. But the Medical Center is swiftly capitalizing on its success in responding to the earthquake in Haiti, where it dispatched more than 40 medical volunteers and ran a field hospital outside of Port-au-Prince. Dozens of physicians and researchers have been successfully leading independent research projects all over the world, including a 10-year National Institutes of Health–funded research program in Bangladesh studying the effects on millions of people whose wells were poisoned by arsenic. Through the Global Health Initia-

students, residents and researchers from across the campus and create partnerships with universities across the world.

In some ways, the Medical Center is late arriving at global health. Harvard, Tufts, Stanford and other leading insti-

tive, the Medical Center is developing a global health master’s degree program starting in the fall of 2011. There’s also

University of Chicago Medical Center


not willing to continue,” he said. “It’s a combination of personal difficulty, the logistics and the administrative and bureaucratic problems. You’re living in rural areas. It’s not hotel living. “Even if everything were equal in applying for research grants with the NIH, at the end of the day, you have to justify why United States government funds should finance this project overseas. You have one extra hurdle to cross to get the money. If I had the exact same project in the United States, there’d be one less hurdle.” After researchers like Ahsan receive funding, they still have to work with local governments for approval. They have to set up local collaborators, work with the community and deal with local politics. All that in addition to spending weeks, if not months, away from home and family back in the States. “It’s worth it to me,” Ahsan said. “It’s rewarding work.”

Medical Volunteerism Becomes Part of a Practice Aisha Sethi, MD, a Medical Center dermatologist who specializes in tropical skin diseases, was so determined to continue her work overseas that she made it part of her employment discussions when she was considering an academic position at the Medical Center in 2006. “I wanted to include a month of volunteerism as a part of my practice,” she said. It also was important to Sethi that she lead by example. It had been difficult for her to find global health mentors in the United States when she was a student, and she wanted to encourage students and residents to volunteer their time in “resource-restricted settings.” “I wanted to make students feel like this was something doable and to make it part of their careers,” she said. Though she was born in North Carolina, Sethi grew up in Lahore, Pakistan, where her family still lives. During a

dermatology residency, she worked at a leprosy clinic in the Hospital for Tropical Diseases in London. Then, in her final year of dermatology residency training at Yale, she traveled to the Regional Dermatology Training Center in Tanzania for an elective rotation. “That’s where I got my big passion for dermatology, for working overseas. I could not see myself being a dermatologist with- “It’s a combination of personal difficulty, the out being involved in skin care logistics and the adminin developing countries. It was istrative and bureaucratic my median of happiness: I could problems. You’re living live in the United States but still in rural areas. It’s not feel I was a contributing memhotel living.” ber of the world community.” Habibul Ahsan, MD, runs Like many physicians at the two research projects in Medical Center, Sethi also Bangladesh that study devotes her time to making a difthe health effects of ference at home. A few times a contaminated drinking year, she volunteers at a free water supplies. clinic on Devon Avenue in Chicago, where there are many uninsured South Asians. Her ImmunoCompromised Clinic at the Medical Center is the only one in Chicago that caters to skin disease in HIVpositive patients. She also has taught the tropical skin disease section of a tropical medicine course at the National Naval Medical Center in Bethesda, Maryland. But, she says, the highlight of her practice is each summer, when she spends a month in Malawi treating people with a variety of tropical skin conditions. Her patients suffer a range

A Nigerian woman cooks with her child on her back, exposing both to indoor air pollution from using biomass for cooking. Photo by Christopher ’Sola Olopade

discussion about developing a global health residency track for residents who can spend an extra year in the master’s degree program. The Pritzker School of Medicine has established global health as one of five curriculum tracks. In addition, the Medical Center is forming “brain exchange” partnerships with universities all over the world, so that Pritzker students

can study abroad and, in return, students from other universities can come to the Chicago campus. The partnerships also allow foreign universities to tap into the Pritzker technology platform, accessing via “cloud computing” the lectures, pathology and logical reasoning created as part of the Pritzker curriculum. All this is occurring at the same time that the uni-

versity is expanding its sphere of influence by establishing its center in Beijing and its planned institute in New Delhi. “Our students now are very fortunate because they have places all over the world where they can go for meaningful clinical experience,” said ’Sola Olopade, MD, professor of medicine and clinical director of the Global Health Initiative. “And we keep looking for strategic sites where students and residents can benefit.” Some of those places include the University of Andrés Bello in Santiago, Chile; Wuhan University in China; and the University of Ibadan and Lagos State University Teaching Hospital in Nigeria. There also are the Children’s Center Hospital in Shenyang, China; Korle Bu Teaching Hospital in Accra, Ghana; the Muhimbili University of Health and Allied Sciences in Dar es Salaam, Tanzania; the Albino Clinic in Lilongwe, Malawi; and the outpatient clinic near Dhanka, Bangladesh.

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M E D I C I N E O F F T H E M I D WAY of conditions, from common bacterial and fungal skin infections to disfiguring skin diseases, like leprosy and xeroderma pigmentosum, in which patients can’t go out in the sun because each ultraviolet ray causes the DNA in their skin cells to mutate. Many with the disease do not live long and are often called “children of the night” because that is the only time they are allowed outside. In 2007, Sethi started an albinism awareness campaign in Malawi. She wanted to teach parents and caregivers how to care for their albino children’s delicate skin and eyes. Most people there were unfamiliar with sunscreen, which is not commercially available in many African countries. Most albinos have skin cancer from exposure to the sun by the time they are teenagers, because their skin is lacking the protective melanin pigment. Sethi teaches albinos and their parents about the dangers of sun exposure and gives them sunscreen, often collected from departing tourists, donated by companies and shipped in from the Medical Center. She also began an albinism registry and started a weekly clinic for albinos that runs even when she’s in the United States. The program has spread to other hospitals in Malawi.

“A global health experience should start as early as college.... If you’ve had that experience, it tailors what kind of medical school you choose, what kind of career you will have and what specialty you will choose.” — Aisha Sethi, MD Skin cancer was thought to be the biggest threat to albino children: The rate of albinism worldwide is reported to be 1 in 20,000, but the rate in Africa, according to some estimates, is 1 in 4,000. Then, in 2008, the black market began commanding as much as $2,000 for the arms and legs of albinos in Tanzania, and several albinos were brutally killed when machete-bearing thugs hacked off their limbs. “They’re outcasts, considered as having special powers,” Sethi explained. In some parts of Africa, albino children are discouraged from attending school. Parents hide them at home for their safety and for fear of ridicule. Custom calls for people to spit on albinos for luck. They are regarded as devils and their limbs are treated as lucky charms. Sethi’s albinism campaign has become increasingly important and garnered the support of the Malawian government, which “I can go for a month each wants to stop the stigma. Yet, year and have a sustainSethi believes short volunteer able program because stints are only effective if they this program goes on are associated with programs that without me.” are already established. “You Aisha Sethi, MD, teaches need to make on-the-ground conalbinos and their parents tacts and maintain relationships about the dangers of sun with people. I can go for a month exposure in Malawi. each year and have a sustainable program because this program

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Boniface Massah, a Malawian collaborator of Aisha Sethi, MD, teaching a mother how to apply sunscreen. Photo courtesy of Aisha Sethi, MD

goes on without me. The problem with a lot of volunteer work is that something only happens when you are there. This way, we are able to leave something in process on the ground.” Sethi often takes residents and students with her and sees a growing interest in global health projects. “It’s amazing how many students want to make global health part of their career. I think that a global health experience should start as early as college, at least prior to medical school. Because that’s what makes you interested in going to medical school, and if you’ve had that experience, it tailors what kind of medical school you choose, what kind of career you will have and what specialty you will choose. It sticks with you for the rest of your life.” One of Sethi’s big goals is to start a skin disease program in Pakistan, where her family lives. This summer, when Pakistan experienced massive flooding, Sethi decided to take a vacation and go home. She contacted the Pakistan TeleDermatology Society and they arranged for her to go to refugee camps where she could treat skin diseases for a week. The group she was with treated 600 patients a day. Most patients had scabies, a parasitic infection. Others were diagnosed with bacterial and fungal skin infections, particularly ulcers on their feet. “At the end, I wondered how much I had helped,” she said, recalling the crowds who sought treatment. “But the good thing about infectious skin diseases is that most of them are curable. And because of their infectious nature, they can spread rapidly through refugee camps, so we did do a lot.” Sethi left with a determination to return, and in December, she took students with her to treat more refugees. Her volunteer work overseas impressed the American Academy of Dermatology so much they nominated her to receive the President’s Volunteer Service Award, which she received in January from the White House for her community service efforts in Pakistan and Malawi. “What motivates me is that my grandmother was a refugee,” Sethi said. “And she used to tell me stories. She lost an eye in one of the riots when they were forming India and Pakistan. I know people who are affected by the suicide bombings and the floods. And when you have the skills to contribute, you think: ‘How can I not go?’” ■


Learning to “Dig” the Sciences Project Exploration inspires young paleontologists By Brooke O’Neill

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eeking into paleontologist Paul Sereno’s Fossil Lab on the University of Chicago campus, it’s difficult to be bored — even for a teenager. A 135-million-year-old dinosaur skull sits atop a corner file cabinet, casual as an office candy bowl. A pelican skeleton swings from the ceiling. For 14 Chicago Public Schools students who visited in August, there were even more surprises. “I have pieces of dinosaur eggshells,” announced Sereno’s lab coordinator, Sara ElShafie, a fourth-year undergraduate biology major. A gasp came from the back of the room. “For real?” asked Chelsea Lamb, a sophomore at North Lawndale College Preparatory High School. ElShafie nodded. “And a dinosaur tooth,” she added, prying open a small chestnut box to reveal the dental remains of a Carcharodontosaurus, a beast slightly larger than T. rex who roamed northern Africa 90 million years ago. The session was part of Project Exploration, a nonprofit organization that gives students a chance to see themselves as scientists. After two weeks of classes on the university campus, Lamb and her fellow explorers, all participants in Project Exploration’s Junior Paleontologist program, spent a week digging for fossils at the Mammoth Site in Hot Springs, South Dakota, the world’s largest mammoth excavation site. “The goal is not necessarily to turn out paleontologists, but to turn on their energy and drive,” said Sereno, professor of organismal biology and anatomy, who founded Project Exploration with his wife, Gabrielle Lyon, in 1999. Winner of a 2009 Presidential Award for Excellence in Science, Mathematics and Engineering Mentoring, Project Exploration aims to build long-term relationships with middle and high schoolers who are curious about science but may not be at the top of their class, particularly girls and minorities. “We really try to level the playing field for kids least likely to get involved with science to have meaningful experiences with it,” Lyon said. To that end, they bring in working scientists, many from the Division of Biological Sciences, to teach sessions. Nearly 1,000 local teens have participated in Project Exploration’s free after-school and summer programs. The approach works. Approximately 95 percent of students who participate graduate from high school, compared to a dismal 54 percent for the average Chicago Public Schools cohort.

From top: Kaylor Oscar (left) and TyKesha Baker reconstruct the bones of a bison spine they found while hiking in Yellowstone’s backcountry. Brianna Bennett (left) and Dana Skorupa, postdoctoral student of the Thermal Biology Institute, test a water sample for levels of sulfur. Photos courtesy of Project Exploration

Among Project Exploration high school graduates, roughly 58 percent enroll in a four-year college and more than a third major in science. “Students realize they’re capable of something,” Lyon said. Ultimately, Sereno hopes Project Exploration can become a national model for engaging youth with science. “We can be a pioneer in the ways an urban university changes the lives of the kids and neighborhoods surrounding them,” he said. Among those youngsters is Kaylor Oscar, a freshman at Chicago’s Calumet High School of Technology, who took her first plane ride, did fieldwork in Yellowstone National Park and survived her first hiking trek as part of Project Exploration’s All Girls Expedition this summer. “You have to be a person who is willing to overcome your obstacles,” said Oscar, who pushed through a 3-mile walk at 6,000-feet elevation. For many, Project Exploration is the first step toward a science career. Andres Buitron, 24, went on to earn a degree in anthropology and geoscience from the University of Montana after falling in love with the Badlands during a 2002 Junior Paleontologists expedition. “It’s definitely a life-changing program,” said Buitron, who returned to Big Sky Country this fall for graduate studies in physical anthropology. This year’s Junior Paleontologists seemed to feel the same way already. After the Fossil Lab session, several confessed how excited they were to be in the program. Dashawn Julion, a sophomore at the University of Chicago Charter School Woodlawn campus, recalled getting the acceptance call on his birthday. “That,” he said, “was a good gift.” ■

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M E D I C I N E O F F T H E M I D WAY

Hannah Hartman (right), 7, and her sister, Lindsay Hartman, 9, of DeMotte, Indiana, are both patients of David Frim and enjoy Discover Camp. Photo by Dan Dry

Feeling Like a Kid: Neurosurgeon sponsors camp for children restricted by neurological conditions By Brooke O’Neill

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ediatric neurosurgeon David Frim doesn’t flaunt his accomplishments. A specialist in congenital anomalies of the nervous system, Frim, MD, PhD, chief of neurosurgery and the Ralph Cannon Professor of Surgery and Pediatrics, doesn’t boast about the hundreds of complex surgeries he’s performed on children with hydrocephalus, epilepsy and other neurological disorders. He’ll likely not mention the summer retreat he started that caters specifically to families living with chronic neurosurgical conditions. And he won’t gloat about his pioneering research on the cognitive effects of several rare genetic syndromes. “It’s just a tiny little thing,” Frim said, plucking a slightly yellowed document from his office bookshelf, his first public paper in Pediatric Neurosurgery from 1990, about a brain malformation he’s spent the past two decades investigating. What Frim will talk about is the resilience and courage of his young patients. There’s Daniel Hutcheson, 22, who suffers from a rare congenital disease called KlippelTrenaunay syndrome that keeps him confi ned to a wheelchair and grappling with debilitating headaches. Then there are Gabe and Lindsay Hartman, 9-year-old twins born with Chiari (kee-AR´-ee) malformation, a structural abnormality that causes the cerebellar tonsils to sneak through an opening at the base of the cranium into the spinal canal, disrupting the flow of cerebrospinal fluid. Neither child can play soccer or dodgeball because a jolt to the

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University of Chicago Medical Center

head could dislodge the surgically inserted shunts that route fluid through their brains and spinal cords. “A lot of these patients don’t really have ‘normal’ lives,” Frim said. Many have spent their childhood in and out of the hospital, captive to pain that ebbs and flows but rarely disappears. Those with shunts, like the Hartman twins, must forgo a laundry list of forbidden amusements — bumper cars, trampolines, contact sports — that could damage their devices and worsen the underlying neurological defects. “The thing about pediatric neurosurgeons is that we’re one of the few groups of surgeons who have chronic patients,” Frim said. “Those with congenital anomalies, with shunting devices, come back year after year because we have to manage the problems. So we end up with patients we know quite well.” That familiarity with chronic patients — and the physical barriers they face — compelled Frim to step outside his surgeon role and create a summer camp tailored to his patients’ special needs.

Designing a Space of Their Own That’s how Discover Camp evolved. In 2007, Frim teamed up with mother Janet Hutcheson to launch a five-day retreat open to all University of Chicago Medical Center neurosurgery patients and their families. Part kids camp, part emotional support group, the event takes place at a different Midwest campground each year and offers a laid-back nature experience geared toward those with physical limita-


tions. Here, kids play without fear of disrupting their surgical hardware and get a brief time-out from the medical issues that govern their daily lives. Frim sponsors the annual event, securing funding from the Medical Center, including the Section of Neurosurgery’s research and patient education fund, while Hutcheson manages the logistics. The camp started with 10 families and has nearly doubled in size. This past July’s event, held in Howe, Indiana, drew 90 people — 18 families in all — including 29 patients, ranging from infancy to their early 20s.

“In a traditional summer camp, these kids wouldn’t have the experienced eyes watching to keep them from being hurt.” — Janet Hutcheson “It’s a great help to kids to meet others who have the same problems, the same operations, the same restrictions,” said Frim, who struggles to keep the burgeoning camp afloat on limited financial resources. This year, the monies subsidized several meals, camp T-shirts, prizes and $100 toward each family’s lodging. For Frim, the camp is a way to offer families an emotional camaraderie he can’t provide. “The biggest thing parents tell me about the camp is that they fi nd there are other people who have all the same issues they do,” he said. “I can tell them that, of course, but it’s not the same as when they actually meet someone.” While Frim treats patients at the Medical Center in Chicago, Hutcheson dedicates several months to coordinating the fiveday program. “There is always something these kids shouldn’t do or can’t have done to them,” said Hutcheson, who first brought her son, Daniel, to the Medical Center 11 years ago. “We try to give them a chance to play and do activities that allow them some freedom.” At a morning of camp “Olympics” this summer, Hutcheson and other parents crowded the sidelines of a large grassy field, cheering as children balanced golf balls on spoons during a slow-paced relay and raced against the clock to decorate one hapless father in an entire box of Band-Aids. The adults monitored the games from their lawn chairs, encouraging their sons and daughters to go at their own pace and take breaks if they started to feel pain or fatigue. “In a traditional summer camp,” said Hutcheson, “these kids wouldn’t have the experienced eyes watching to keep them from being hurt.”

A Rare Gift Although Discover Camp participants have a range of neurosurgical diagnoses, including Chiari and increased intracranial pressure, many came to Frim for the same reason: No one else had the in-depth knowledge of their often rare neurological conditions. Tyler Start was only 2 years old when his mother, Sheryl, David Frim, MD, PhD, chief of neuronoticed him crying and holdsurgery, started Discover Camp for ing his head while being pushed children with chronic neurosurgical conditions. Photo by Bruce Powell on a swing. An MRI revealed

Discover Camp allows children with the same neurological challenges to find friendship and support. Photo by Dan Dry

he had Chiari malformation, the same structural anomaly of the cerebellum the Hartman twins have. Unable to find a Chiari specialist near their hometown of Kalamazoo, Michigan, Sheryl Start took Tyler to Frim after her pediatrician recommended him and she read positive feedback from other parents on Chiari online discussion boards. “Dr. Frim gave us personal attention and answered all our questions,” Sheryl Start recalled. In 2009, Tyler, now 5, underwent five brain surgeries and three extended hospital stays to treat a case of hydrocephalus caused by his Chiari. This past summer was the family’s first Discover Camp. “Tyler’s medical condition has had a huge impact on our life,” said Sheryl Start. “We wanted to connect with other families who understood our situation. That’s exactly what the camp provided.”

Building Bridges Watching adults and children joke during a pancake breakfast one morning during July’s camp, it was easy to mistake the relaxed atmosphere for a family reunion. Towering pine trees lined the campground dotted with cozy rental cabins, RV campers and the remains of a s’mores bonfi re. Scents of syrup and sausage mingled in the air as people ate off Styrofoam plates and huddled side by side at picnic tables. As the pancakes dwindled, families gathered for a group photo, all dressed in matching tiedyed camp T-shirts emblazoned with the tagline “Discover the Journey We Share.” For many, the retreat is an opportunity for families who might cross paths during their children’s medical treatment to bond under less stressful circumstances. In a world of frequent hospital visits and surgeries, the camp provides a reprieve that would be out of reach for many without Frim’s support. As Sheryl Start put it: “If your kid is in the hospital all the time, you struggle with finances. If it weren’t for Dr. Frim, we would not have been able to go and make those personal connections.” For young patients struggling with lifelong medical challenges, Discover Camp offers a quick emotional recharge that reminds them they’re not alone in the journey. “They need this support,” said Frim. “If I could, I would endow it in perpetuity.” ■ For more information on Discover Camp, please contact Lauren Hull, senior operations manager, Section of Neurosurgery, 773-702-0486 or lhull@surgery.bsd.uchicago.edu.

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PRITZKER PROFILE Hodges, a Miami, Florida, native, hadn’t planned on medical school. She considered medicine an “extreme and punishing profession to go into. I joked that it would be the last thing that I would do.” After graduating in 2000 from New York University with a bachelor’s degree in fi lm and TV production, she took a job at the school’s Ehrman Medical Library. While she was working there, her brother was diagnosed with schizophrenia. She began researching the condition. “It became a perfect environment to be in and to do research about what he was going through. As I did, the material itself became so interesting to me.” She researched schools in Florida, New York and Massachusetts. The Laura Hodges, a fourth-year student at the Pritzker School of Medicine, is filming a documentary about people with severe and persistent mental illness. Photo by Bruce Powell Pritzker School of Medicine’s interdisciplinary aspect appealed to her most. “I wanted an environment that encouraged interests outside of medicine,” she said. Pritzker plays an unlikely role in Laura Hodges’ film career She has many. She loves contemporary art and frequents museums By Shane Graber and art galleries. She takes in an aura Hodges is finally putting her film degree to work, but opera or a play when she can. Her shelves are stuffed with she had to go to medical school to do it. books on anthropology, sociology and everything from Judaism In the South Side basement of a psychosocial services agen- to Buddhism to Santeria. She rode her bike across the councy, she recently brainstormed a movie idea with a small group. try before medical school. Bespectacled and wearing a ponytail, Hodges, 31, worked At the University of Chicago, Hodges received a human rights patiently, encouraging members to get involved. internship and went to India for 10 weeks. She helped record in“What do you want to get out of your participation?” she terviews with people with mental illnesses and mental health asked. “What do we want this film to be?” advocates, which gave her the idea for the film. “I want to be able to advocate for the mentally ill,” said Michael Marcangelo, MD, assistant professor and director Elizabeth Rahuba, who has schizoaffective disorder. “I want to of medical student education in the Department of Psychiatry reduce the social stigma. We are just people with an illness.” and Behavioral Neuroscience, advises Hodges. Other participants gave similar answers. “She created the project from the ground up,” he Hodges, a fourth-year student at the University of Chicago said. “I’ve just tried to provide her with moral support Pritzker School of Medicine, is filming a documentary about and recommendations.” people with severe and persistent mental illnesses, with funding Marcangelo expects her project to give people a clearer unfrom the American Psychiatric Foundation’s Helping Hands derstanding of the mentally ill community: “People with severe Grant Program and the Albert Schweitzer Fellowship. and persistent mental illnesses talk about their illness in ways “I haven’t done a lot with my film degree,” Hodges said. “So only they can. They will become their own advocates.” that’s why it’s exciting to finally use what I learned in film school The workshops meet once a week. Hodges shows particiand to integrate it into what I’m doing now with medicine.” pants how to use film equipment and create a product. Hodges conducts workshops at Thresholds South, a psycho“The idea is to give people the tools they need to make the social services provider for people with severe and persistent film themselves,” she said. mental illness. Participants film and interview each other. Iris Hodges is taking advantage of an extended curriculum Birks loves music, especially Tommy James and the Shondells. program at Pritzker, which allows students to take an extra Katara Mallory writes fan fiction based on characters in the year to pursue outside interests. She is using her extra year “One Tree Hill” television series and the video game “Wing to work on the fi lm and expects to fi nish it by graduation in Commander: Prophecy.” Kenneth Williams wants to make films 2012. She is considering a career in psychiatry, possibly at that advocate for the mentally ill. an academic medical center. Hodges isn’t sure what her “I want people to know about the prejudices we have to face fi nal fi lm product will look like. as a society,” he said. “It all depends on what the participants want.” ■

From Film School to Med School

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For more information, call 1-888-UCH-0200 or visit uchospitals.edu


CLASS NOTES

C L ASS N OT E S

1950s John R. Benfield, MD ’55, writes, “[In June 2010] some members of the Class of 1955 reunited on the McEachran Farm Homestead in Caledonia, Illinois. The hosts were Herb Greenlee, MD ’55, his son, Ken, and the McEachran Farm staff.” Mark A. Goldberg, PhD ’59, MD ’62, writes, “At 76, I am still teaching neurology residents.” Paul R. Kuhn, AB ’52, SB ’54, MD ’56, is enjoying retirement in Newport Beach, California, after practicing internal medicine there for 40 years.

1960s Roger W. Becklund, MD ’61, has been retired since 1998 and lives in the Wisconsin Northwoods. Michael Bihari, MD ’66, reports, “Marion and I have been living on Cape Cod for the past 10 years. I’m president of the board of our local community health center and work on several other boards that focus on youth. I spend some time as a health care consultant and work as the health insurance guide for About.com, part of the New York Times Company.” Ivan F. Diamond, AB ’56, SB ’57, MD ’61, PhD ’67, retired from the University of California, San Francisco, in 2005 when he was recruited to CV Therapeutics (subsequently acquired by Gilead Sciences) as vice president of neuroscience to develop a new medication for alcoholism and addiction. He writes, “This has been my research interest for many years and the change from academic medicine to biotechnology was exciting and rejuvenating.” Noel L. Hoell, MD ’64, writes that he is “enjoying semiretirement from private practice with half-time work as the psychiatrist at the University of Montana Student Health Service!” Ronald J. Krone, MD ’66, is still an active member of the cardiology division at Washington University. He no longer does coronary interventions but has become active in the cardiac problems of oncology. He writes, “Ann and I are traveling a fair amount with six grandchildren, four in Portland and two in New York City, plus some time in Paris.

Class of 1955 reunion: Front row: Marian Wemple; Anna Nathanson; Joan Moffat, AM ’53; Nelson Moffat, MD ’55; Sue Kunz; Ruth Leider; Pat Kraft; Sumner Kraft, MD ’55. Back row: Ron Wemple, MD ’55; Dick Katzman, MD ’55; Roberta Katzman; Larry Nathanson, MD ’55; Bill McColl, MD ’55; Barbara McColl; Jim Leider, PhB ’50, MD ’55; John Benfield, MD ’55; Werner Kunz, MD ’55; Herb Greenlee, MD ’55. Photo provided by John R. Benfield

Trying to figure out how to manage my time, but not doing so well at the moment.”

every day in a very small space while living in a very big city is neurosurgery heaven.”

software company. We are healthy and we find life remarkable and precious.”

Daniel Rosenblum, SB ’62, MD ’66, is now a program officer for the Clinical and Translational Science Awards, a cooperative agreement with up to 60 academic centers to transform health care research.

George R. Buchanan, MD ’70, was presented with the 2010 Arnold P. Gold Foundation Humanism in Medicine Award from the Association of American Medical Colleges. Buchanan is professor of pediatrics and director of pediatric hematology-oncology at the University of Texas Southwestern Medical Center as well as a clinician.

John A. McDonald, MD ’71, has been retired since 2006. He worked in emergency medicine for 18 years and occupational medicine for 17 years. He currently lives in Richland, Washington, where he built a home on the Horn Rapids Golf Course. His wife, Angel, died in 2003 after 28 years of marriage. He writes that he spends “much of my time traveling, reading and doing photography.”

David W. Scott, SM ’64, is now vice chair for research in the Department of Medicine at Uniformed Services University of the Health Sciences in Bethesda, Maryland. Brian N. Smith, SB ’57, MD ’60, reports, “Now 82, in relatively good health. Just moved into a brand new house. Enjoying 20 years of retirement.” Louis W. Tinnin, MD ’61, writes, “My wife, Linda Gantt, now owns and directs our trauma clinic, Intensive Trauma Therapy, Inc., and I volunteer.” Dennis K. Wentz, MD ’61, is the author of a new history, Continuing Medical Education: Looking Back, Planning Ahead, forthcoming from Dartmouth College Press in 2011.

1970s James H. Beeson, MD ’76, retired in August 2009 from the University of Oklahoma, Tulsa, where he was chair of obstetrics and gynecology. He started private practice in October 2009 and is now an adjunct professor for Oklahoma State University College of Osteopathic Medicine. Jeffrey A. Brown, MD ’76, writes, “New start in New York sans title and tenure, but with a nationwide platform for the neurosurgical treatment of complex facial pain. Working

James B. Carpenter, MD ’76, writes, “I am in my 30th year working in a county health system, training family practice residents, coordinating the child maltreatment program, being a hospitalist and having a clinic where I have seen generations of my patients. I thank the University of Chicago for an education and experience that has allowed me to continue to serve the underserved and help launch young doctors to go forth and make a difference.” Robert B. Dreisin, MD ’71, reports, “I’m happily retired. Married to Pam. Controlled by two sons.” Irwin D. Feintzeig, MD ’79, writes, “Alive and well, living in Connecticut. Last of three kids to graduate next June.” Dorothy Davies Johnson, MD ’71, reports from Arizona, “Retiring from developmental pediatrics several years ago, I’ve found new journeys: in early child advocacy as a member of Central Pima’s First Things First Regional Partnership Council (www.azftf. gov) and teaching a course on human development. On summer weekends, Henry, our dog Cody and I drive 50 minutes to our cabin. Henry enjoys his day job as medical director for a medical

Lawrence J. Rudd, MD ’76, reports, “After graduating from Harvard Law School in 1990, I practiced law in Southern California. This past May, I closed my litigation practice, and I am now a full-time mediator, with particular emphasis on medical malpractice cases.” George T. Shybut, MD ’76, is currently president of the Performing Arts Medical Association. Ronald J. Sokol, MD ’76, is director of the Colorado Clinical and Translational Sciences Institute at the University of Colorado, Denver (UCD); chief of pediatric gastroenterology, hepatology and nutrition at UCD and the Children’s Hospital; and vice chair of clinical and translational research in the Department of Pediatrics. He is also chair of the steering committee for the Childhood Liver Disease Research and Education Network. He says, “My two sons are both in college (one in computer sciences and one in pre-med) and Lori (my wife) and I are enjoying our dog and life in Colorado.” Gordon L. Telford, MD ’71, writes, “Our son, Andy, died last

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C L ASS N OT E S month at the age of 23. He was a remarkable young man who faced the challenges of autism with a courage and determination that inspired all who knew him. He touched many lives during his lifetime. He was an Eagle Scout and a member of the Boy Scout Order of the Arrow. He was an award-winning modeler and artist. He kept me busy hiking, canoeing, swimming, camping, cycling, making models and launching rockets. My wife and I will miss him tremendously. I can only dream of having the impact on others that he did.” Charles E. Welander, MD ’71, retired from gynecologic oncology in September 2010. Robert M. Wolfe, AB ’72, MD ’76, writes, “Went from associate professor at Northwestern to clinical associate professor at the University of Chicago Pritzker School of Medicine. Enjoying a satisfying mixture of practice, writing, teaching students and residents and some tech stuff. Pritzker is much more user-friendly now. The med students smile; they’re happy; they love their school.”

1980s Clarence Henry Braddock III, MD ’81, writes, “In my current role as associate dean, I oversee the entire MD curriculum at Stanford and have been managing some significant changes in our curriculum for the past seven years. I’ve also continued my work in bioethics and decision making. I sit on a number of Stanford Hospital quality committees with my friend and classmate Bryan Bohman, MD ’81, who is chief of staff.” John H. Burke, AB ’82, MD ’86, is in private practice as a cardiac electrophysiologist at Christ Hospital in Oak Lawn, Illinois. Catherine M. Creticos, AB ’77, MD ’81, reports, “Will be happily married 30 years in 2011 to Harry Poulos, AB ’76, MD ’80. Working in infectious diseases and HIV medicine in private practice and as chief of infectious diseases at Illinois Masonic Medical Center in Chicago and medical director of Midwest AIDS Training and Education Center at the University of Illinois, Chicago.” Mary C. Dinauer, PhD ’79, MD ’81, writes, “After many years in Indianapolis, I recently moved to St. Louis to take a new position

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as scientific director of the Children’s Discovery Institute at Washington University School of Medicine and St. Louis Children’s Hospital.” Maryellen L. Giger, PhD ’85, was inducted into the National Academy of Engineering in 2010. Jeffrey F. Granger, MD ’81, reports, “In 2008, I left 22 years of private practice in Indiana to start a new academic career in Ohio.” Karen J. Ohland, SM ’86, has been named vice president of financial operations for the Knowledge and Community Sector of the American Society of Mechanical Engineers (ASME), a voluntary position. Ohland is a financial administrator at the Metropolitan Museum of Art in New York City. Carol Ann Olson, PhD ’82, MD ’86, received the Alumni Achievement Award in October 2010 from Concordia College in Moorhead, Minnesota. The award is the highest honor bestowed on alumni and recognizes outstanding achievement or service to the community, church and/or Concordia College. David S. Pellman, AB ’81, MD ’86, writes, “Time has flown by, but I think I still carry the indelible mark of my University of Chicago education, college and medical school. My laboratory at the Dana-Farber Cancer Institute at Harvard Medical School studies cell division, genome stability and cancer.” Jeffrey B. Rich, MD ’81, says, “Back working full time as a cardiac surgeon after having run Medicare at the Centers for Medicare and Medicaid Services and the Department of Health and Human Services during the end of the Bush administration.” David T. Schwartz, MD ’81, is the author of Emergency Radiology: Case Studies (McGraw-Hill, 2008) and coeditor of Emergency Radiology (McGraw-Hill, 2000). Anjali Singh, MD ’89 (see Sunanda Singh, AB ’85, PhD ’92, MD ’92)

1990s Veena Vishwanath Arun, MD ’95, writes, “I finished my residency at the University of Chicago and stayed on as full-time faculty until spring 2008. I have taught students and residents in ophthalmology and served as an

ombudsman for the medical students. I have also served on the American Board of Ophthalmology as an examiner for the past five years. More recently, private practice is allowing me to fill a void in the Hyde Park community for quality eye care.” Sheryl Lynn M. DonahueHoyer, MD ’91, reports, “I have enjoyed practicing dermatology at a big practice in northwest suburban Chicago for over 15 years. I have been married to Jeff for 22 years, and we have three children in high school. I recently returned to a hobby I had in high school, theater. I just finished playing Prudy Pingleton in ‘Hairspray.’ I had so much fun, and I don’t think I embarrassed my kids too much!” Eva Cleopatra Ihle, PhD ’97, MD ’00, completed her general psychiatry residency and child/ adolescent psychiatry fellowship, as well as postdoctoral training, at the University of California, San Francisco. She remains at UCSF on faculty and works as medical director of the Autism Clinic and research director of the Young Adult and Family Center. Sunanda Singh, AB ’85, PhD ’92, MD ’92, practices plastic surgery with his wife, dermatologist Anjali Singh, MD ’89, in Tampa, Florida.

2000s David Peter Beckmann, MD ’08, is chief resident of the family medicine program at the University of Wisconsin. Tom Sheng Liu, MBA ’03, MD ’03, writes, “Finally done with training. Welcome the grand opening of Liu Plastic Surgery (www.liuplasticsurgery. com). Thanks to all who have supported and inspired me.”

IN MEMORIAM

1940s Robert M. Chanock, SB ’45, MD ’47, an international leader in virology, died on July 30, 2010, in Sykesville, Maryland, at the age of 86. Chanock was former chief of the Laboratory of Infectious Diseases at the National Institute of Allergy and Infectious Diseases. He is best known for identifying and characterizing human respiratory syncytial virus (RSV), the most common cause of lower respiratory tract diseases in

infants and children worldwide. RSV accounts for more than 90,000 hospitalizations of infants each year in the United States alone, and for 1 million deaths worldwide. Chanock also discovered four parainfluenza viruses, new strains of rhinovirus and coronavirus, which can cause the common cold, and Mycoplasma pnemoniea, a cause of bacterial pneumonia. His lab developed vaccines against hepatitis A and rotavirus, among others, while making strides toward vaccines against RSV and dengue fever. Chanock received the highest awards and honors available for work on infectious diseases, and he was elected to the National Academy of Sciences. His wife, Catherine Elizabeth Osgood, and his son, Foster O. Chanock, preceded him in death. He is survived by his son, Stephen Chanock, and by grandchildren. Peter V. Moulder Jr., MD ’45, died on May 10, 2010, at Waccamaw Community Hospital in South Carolina at the age of 89. Born on January 26, 1921, he was a son of the late Marcella and Peter Vincent Moulder Sr. A World War II Navy veteran, Moulder received his BS magna cum laude at the University of Notre Dame in 1942 and his MD with honors at the University of Chicago in 1945. He also received his MA with honors at the University of Pennsylvania in 1971. He was an intern at the University of Chicago as well as a resident in surgery, chief resident in general surgery and professor in the Department of Surgery. In addition, he spent time as a resident in surgery at the University of Illinois and was a professor of surgery at the University of Pennsylvania, University of Gainesville, and Tulane University. He was also medical director at Biosouth Research Labs from 1992 to 2010. He contributed to numerous publications and was the recipient of many awards including the Block Award from the University of Chicago Department of Surgery. He is survived by his wife, Jane Moulder; two daughters, Mary Jaeger and her husband, Bob, and Jane Kauzlarich and her husband, Michael; two sons, Peter Moulder III and his wife, Donna, and James Moulder and his wife, Carlotta; and seven grandchildren: Anne, Bill and Tim Jaeger, and Alicia, Theresa, Peter, and Glenn Moulder.


F O R M E R F A C U LT Y Eugene Goldwasser, SB ’43, PhD ’50, who isolated and purified an anti-anemia protein that helped launch the biotechnology industry, died on December 17, 2010, in his Hyde Park home, of complications related to prostate cancer. He was 88. Goldwasser, the Alice Hogge and Arthur A. Baer Professor Emeritus of Biochemistry and Molecular Biology, is known as the “father of EPO” for his discovery of erythropoietin. EPO controls the production of oxygen-carrying red blood cells, and it took nearly 25 years to purify and isolate. In 1977, at the urging of colleagues and the federal agencies that funded his lab — the Department of Energy and the National Institutes of Health — Goldwasser filled out the patent disclosure form and submitted it to the university, but the application was never filed. Although he missed a chance to share in the rewards of helping to develop a drug that generates billions of dollar of revenue, Goldwasser, who came to the university as an undergraduate on a scholarship and returned for his PhD after serving in World War II, was known for his unassuming character, his delight in doing science and the joy it brought him to see his contributions enable patients to live longer and more productive lives. Goldwasser documented his quest to isolate EPO, publishing more than 150 research studies, 60 book chapters and a book about the work on erythropoietin due for publication this year. He also wrote a short biography of his mentor, Leon Jacobson, MD, who triggered Goldwasser’s interest in EPO. Goldwasser taught in the Department of Biochemistry and Molecular Biology from 1952 until 2002. He chaired the department twice, once leaving retirement to do so. Goldwasser is survived by his second wife, three sons, two stepchildren and seven grandchildren. Allan Lorincz, MD ’47, professor emeritus of medicine, died on September 7, 2010, at age 85 after a long struggle with Parkinson’s disease. Lorincz was a pioneer in the field of dermatology and a powerful advocate for the specialty, which he considered neglected. His research demonstrated the

prevalence of skin disorders and their implications on other organ systems. He led a push to apply basic biological science to dermatology and to offer medical trainees more exposure to the field. Lorincz came to the University of Chicago for college and remained his entire medical career. He joined the university faculty in 1952 as an assistant professor of medicine and was chief of the Section of Dermatology from 1961 to 1991. He maintained his appointment while serving for two years as chief of the Department of Dermatology at the Walter Reed Army Institute of Research. Remembered by friends and colleagues for his creativity, humility and encyclopedic knowledge of skin diseases, Lorincz published more than 150 papers and review articles in leading journals, held leadership positions in local and national dermatological societies and served on the editorial board of various medical journals. He received the first ever Gold Medal Award from the Chicago Dermatological Society, which also established an endowed lectureship in his name. He is an honorary member of dermatological societies in five countries and received awards from the University of Chicago Medical and Biological Sciences Alumni Association. He survived his wife, Lillian Tatter, who passed away in 1996. They are survived by three children, Donald, Linda (Shelton) and Alice; three grandchildren; and Lorincz’s two brothers, Albert and Andrew, both University of Chicago MDs. Lynn Throckmorton, PhD, professor emeritus of biology, died December 14, 2009, after a long illness. An evolutionary biologist, Throckmorton, working with colleagues John Hubby, PhD, a professor of biology, and Richard Lewontin, PhD, formerly the Louis Block Professor of Biology and Mathematical Biology, did important research on the biogeography of fruit flies and on the genetic differences between individuals of the same species. Throckmorton, Hubby and their graduate student Maureen Sims, PhD ’66, jointly were the first to demonstrate in flies that protein variants (detected by their difference in charge) behaved as strictly Mendelian traits. His detailed classification of the thousands of species in the Drosophila genus and its near relatives is still in use. Born in 1927, Throckmorton earned his PhD from the University of Texas in 1959 and came to the University of Chicago in 1961. He was

chairman of the Committee on Evolutionary Biology from 1973 to 1976. Leigh Van Valen, PhD, professor emeritus in the Department of Ecology and Evolution, passed away on October 16, 2010, at age 75. A recipient of the Medical and Biological Sciences Alumni Association’s Gold Key Award, Van Valen was internationally recognized for his theoretical studies of extinction and diversification, the evolutionary and ecological role of energy flow in regulating diversity and the radiation of mammals after the extinction of the dinosaurs. He was also one of the founders of the field of paleobiology, which combines research on current life forms with the study of fossils to answer questions about the processes shaping large-scale evolutionary and ecological patterns. He was one of the earliest modern advocates for the importance of development in evolution, as captured in his much-quoted aphorism: “Evolution is the control of development by ecology.” Van Valen’s most famous paper, “A New Evolutionary Law,” was initially considered so radical that none of the leading journals would publish it. So he founded his own journal, Evolutionary Theory, and published it in 1973. The paper introduced concepts that continue to shape the field of biology. Van Valen posited the law of constant extinction, often called Van Valen’s Law: The probability of extinction bears no relation to how long a species has already existed. To explain this surprising finding, Van Valen proposed the now-famous Red Queen hypothesis, which holds that the struggle for existence never eases up — species must constantly struggle for finite resources, developing new adaptations, weapons or defenses in a prolonged sequence of mutational one-upmanship. After facing resistance to his most daring ideas, Van Valen spoke out against grant-making structures that he believed constrained scientific research. While remaining an independent critic, he held important roles in professional groups and served on the editorial boards of several journals. Van Valen is survived by his wife, Virginia Maiorana; his daughter, Katrina; and his longtime friend Towako Katsuno. Another daughter, Diane, died in 1995.

M E D I C I N E O N T H E M I D WAY A University of Chicago Medical Center Publication Spring 2011, Volume 64, No. 2 Executive and Managing Editor Cheryl L. Reed, assistant director, publications Contributing Editors Kathy DeVries, vice president of communications and marketing Denise Alamad, director of publications John Easton, director of communications Editorial Contributors Ruth Carol William Dale, MD, PhD Shane Graber Kelin Hall Jennifer Martin Rob Mitchum Brooke O’Neill Casey Reid Nicole Richmond Barbara Rose Mary Beth Sammons Kelly Smith Ankur Thakkar Kadesha Thomas Gerald Waddell Brian Welch Photo Contributors John R. Benfield, MD David Christopher William Dale, MD, PhD Dan Dry J. Andrew Gillis HOK /JCDA /AJSNY Loyola University Medical Center Christopher ’Sola Olopade, MD George Perry Bruce Powell Project Exploration Aisha Sethi, MD Danielle Shapiro Jason Smith David Song, MD Design Firm 3C: Chicago Creative Communications, the University of Chicago Editorial Committee Chairwoman Chris Albanis, AB ’96, MD ’00 Lampis Anagnostopoulos, SB ’57, MD ’61 Arnold Calica, SM ’61, MD ’75 Patricia Martin, AB ’74, MD ’78 Jerrold Seckler, MD ’68 Coleman Seskind, AB ’55, SB ’56, SM/MD ’59 Medicine on the Midway is published for friends, alumni and faculty of the University of Chicago Medical Center, the University of Chicago Division of Biological Sciences and the Pritzker School of Medicine. Articles may be reprinted in full or part with permission of the editor. We welcome your comments and letters to the editor. Address Correspondence to: Editor, Medicine on the Midway University of Chicago Medical Center 950 East 61st Street Third Floor, Suite 323 Chicago, IL 60637-1470 Telephone 773-834-8089 Facsimile 773-834-5926 E-mail Editor momedit@uchospitals.edu E-mail Class News alumni@mcdmail.uchicago.edu Find Us on the Web uchospitals.edu/midway © February 2011. University of Chicago Medical Center, Department of Communications and Marketing 013–11

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PERSPECTIVE It was surreal. “I want to see him one last time.” When I arrived, I did something my father never allowed me to do in life: I kissed him on his forehead. Then I sat at his bedside for a while, feeling sad, surprised our lifetime together was really over.

Geriatrics in Theory and Practice I became interested in geriatrics, oddly enough, in the doctoral program of my MD/PhD training in health policy at the Harris School of Public Policy Studies. I was taking a class on aging taught by Christine Cassel, MD, then chief of general internal medicine at the Medical Center and an early leader in geriatrics. I was fascinated by the myriad challenges of caring for older adults, the trade-offs of living longer versus living “better” and the foDale Schempp, Carol Schempp, William Dale and Bruce Schempp, circa 1992. Photo courtesy of William Dale, MD, PhD cus on maintaining independence, functioning and a high quality of life. Cassel told me, to my surprise, “I’m going to turn you into a geriatrician.” I was skeptical. Turned out she was right. Over the ensuing years of residency Personal lessons for geriatric oncology practice and fellowship, I combined my interest in geriatrics and cancer care, focused, in part, By William Dale, MD, PhD on end-of-life decisions. One of my prouddon’t think he’s going to make it another two hours,” the est professional achievements was establishing the Specialized hospice nurse said over my cell phone. Oncology Care and Research in the Elderly (SOCARE) Clinic. I was sitting in my car at 87th Street and Vincennes Avenue No matter what a person’s background, though, when on Chicago’s South Side at 8 a.m., nearly halfway from my your father is dying, there’s no easy way to prepare. home to the University of Chicago Medical Center. As chief Being a Witness of the Section of Geriatrics and Palliative Medicine, I have In November 2009, my father was hospitalized for two weeks, spent most of my professional life treating older adults with intermittently delirious. When I saw him over Christmas cancer and thought I was prepared for my father’s diagnobreak, I was shocked by how thin, wan and aged he apsis of lung cancer in 2006. But by the late summer of 2010, peared. Despite his obviously weakened condition, he my father’s health was declining precipitously, and I felt an insisted on walking without assistance. I knew better than urgency to spend as much time with him as I could, despite to suggest otherwise. our past differences and before it was too late. One morning, I was sitting across the room when I watched, For several months, I had made the 3.5-hour drive from aghast, as he tumbled, face fi rst, to the ground. My boys Chicago to Springfield, Illinois, to visit Dad in his declining were frightened as they scrambled out of the way. As a gercondition. My wife, Tamra, and my three young boys, Xander, iatrician, I know falls are a grave concern: They can cause 7, and twins Harrison and Austin, 4, were almost always with fractures that lead to mortality for older adults. I felt, crazime. Still, I’d had to skip the previous weekend trip because I ly, like Dad was “punishing” me for not being more attentive was delivering the introductory remarks and cohosting a nato the risks, for not insisting on helping him walk or forcing tional conference on geriatric oncology. him to use a cane or walker. Fortunately, he fell lightly onAnd now the hospice nurse was telling me I’d never see to a pillow on the carpeted floor. my father alive again. At Dad’s request, I went through his medications follow“I’m three and a half hours away,” I told her, dreading ing his hospital discharge. I was appalled: He had multiple the drive already and hoping she was wrong, though feeling prescriptions, with duplications, pillboxes scattered throughcertain she wasn’t. Hospice nurses are excellent at predictout his bedroom and adjoining bathroom. Worse, he had a ing the last hours of someone’s life. poor understanding of what they were for, how often to take “I’m sorry,” she said. them and what the side effects might be. I was staring headAbout an hour before I arrived at my childhood home, on at another major geriatric hazard: polypharmacy. Worse my brother’s cell phone number appeared on my caller ID. yet, when I asked questions, he became offended and defenMy heart sank. The tough West Point graduate was calling sive, as if I were questioning his competence. I spent several from my father’s bedside, his voice cracking. hours sorting through and streamlining his medications, “It’s over,” he said. Long pause. “What should we do? explaining my reasoning and trying my best to be helpful They’re already asking when they can come get . . . him.” and sympathetic. “Tell them to leave him on the bed,” I ordered, calmly.

My Father’s Life with Cancer

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PERSPECTIVE

Relationships My relationship with my family, particularly my father, has long been a challenging one. After a major falling out while I was in medical school and a lengthy period of noncommunication, we had been slowly reconnecting. The reasons for the falling out included my decision to enter graduate school, which he opposed and refused to support, and my decision to move in with my girlfriend, now my wife. As a show of independence, I changed my last name, dropping Schempp and using my middle name, Dale, in its place, which is my father’s first name. It only worsened the situation. When my father was diagnosed in 2006, I hoped for a significant reconciliation. But I found that relationships are more complicated, and I remained frustrated by my inability to change the dynamic between us. Sometimes Tamra would travel with the boys to Springfield ahead of me, and she said the friendly atmosphere became “chilly” at my arrival. If anything, the stronger elements of his personality — hardheadedness and suspicion — were accentuated when he felt at his worst. I slowly learned to accept the situation and the stresses he was enduring, trying my best to keep my frustrations to myself, with mixed success.

Kids “Is Grandpa going to die?” Xander asked me one day. “Yes, I’m afraid so.” “Because he can’t breathe?” “Yes.” “Like when Harrison couldn’t breathe?” Uncomfortable silence. Harrison recently had been hospitalized for a severe asthma attack. “No . . . it’s . . . different,” I stammered. “Harrison has asthma, which we are treating with medicine. Grandpa has cancer, and we don’t know how to treat it.” Our three young boys understood the situation at various levels. We tried to be honest without scaring them. I was constantly impressed by their adaptability, their honest questions and their straightforwardness in offering thoughts and feelings. “So, Dad, Grandpa is going to die.” “Yes, that’s right. But not for a while.” “Will we still come visit Springfield after that to play with Grandma?” “Yes. Are you OK with that?” “Well, Grandpa wasn’t very nice to us anyway.” Unfortunately, despite his best efforts, that was true.

his devoted wife for those 45 defining years. From very modest beginnings in rural Ohio, he had lived a full, respectable life. My father was fond of quoting clichés. “When life gives you lemons, make lemonade,” was one he often repeated to my brother and me. It captures the essence of my father. He was the ultimate “make lemonade” person I knew, always trying to make the best of bad circumstances.

“These days, I am more careful to tell my cancer patients and their families about the confusion and danger that may occur in the hospital.” — William Dale, MD, PhD The Aftereffects It’s been a couple of months since my father died. Sometimes I see him in my patients, especially the ones who seem defiant and defensive, those who are most skeptical of my care. Other times, I recognize his struggle in my older SOCARE patients who are dealing with the challenges brought on by cancer later in life. These days, I am more careful to tell my cancer patients and their families about the confusion and danger that may occur in the hospital. And I’m more insistent about getting a geriatrics or palliative medicine consultation for my patients admitted to the hospital. I try harder to prepare patients and their families for the possibility of a dangerous fall and how to avoid it. I tell patients’ families that no matter how exhausting, they should make every effort to spend time with a dying loved one to avoid regrets afterwards. I encourage them to involve grandchildren in the conversation about death and disease. I remind myself that few families are “ready” for their loved one to die, even when given ample notice. My father’s death taught me many things, most of which I thought I already knew from my practice. We are conditioned to believe cancer changes people and relationships, that old wounds will automatically heal in the face of advancing disease. But the reality is that cancer doesn’t fundamentally change people’s personalities, and, in fact, the stress will likely accentuate the strongest elements of a person’s personality, pleasant and unpleasant aspects alike. My father’s death, unexpectedly, renewed my commitment to my older oncology patients and the geriatric principles I’ve learned. And though he would be uncomfortable to hear it, my father’s final months with me have made me a better doctor. ■

Expectations My father died on September 29, less than a week after my mother’s 68th birthday, and he died with minimal warning, collapsing after a trip to the bathroom. Three hours later, he was gone. He had metastatic lung cancer, and he had already lived longer than anybody had anticipated . . . including me. Still, the loss seemed abrupt. On Monday, he had felt good enough to make an appearance at the Springfield public defender’s office, where he had worked for many years. On Wednesday morning, he collapsed and died. My mother asked me to write the obituary. I boiled down his life into four aspects: as a naval officer on a nuclear submarine, as an MBA graduate of the University of Chicago Booth School of Business running a small business, as a lawyer working in the public defender’s office and as a dedicated husband to

William Dale, MD ’99, PhD ’97, associate professor of medicine at the Medical Center, is chief of the Section of Geriatrics and Palliative Medicine and director of the Specialized Oncology Care and Research in the Elderly (SOCARE) Clinic. This past fall, he established the Dale Schempp Memorial Fund for Geriatric-Oncology Research, which supports research at the Medical Center for treating cancer in older adults. For more information about the fund, please contact Bradford Lane at 773-834-6539 or e-mail blane@ medicine.bsd.uchicago.edu.

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Medicine on the Midway - Spring 2011