UConn Magazine

Author: crj99002

  • A Cuban Exchange

    A Cuban Exchange

    A Cuban Exchange

    By Amy Sutherland

    When Tania Huedo-Medina, associate professor of biostatistics (below in UConn shirt), went to Cuba for the first time in November 2015 she had one goal ”” to study the island nation’s well-respected public health system. That quickly proved to be a more challenging undertaking than she expected. Still, during multiple visits over the next two years ”” documented in these photos taken by her and her team ”” Huedo-Medina and others from the UConn research community have forged relationships with Cuban health workers that promise to improve data collection and overall healthcare in both countries.

    Tania Huedo-Medina
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    Door To Door

    Huedo-Medina’s persistence slowly began to pay off. She finally got a first-hand look at how Cuban health care workers knew so much about the country’s citizens when she was invited to go door to door with them in Vedado, a middle-class neighborhood in Havana. Health workers routinely visit Cubans in their homes to gather information and address any medical concerns they have, a practice that seems unthinkable in the comparatively privacy-obsessed U.S., she says. But in Cuba, as Huedo-Medina saw, people readily open their doors to doctors and answer all of their questions.

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    Connections

    During her first visits to Cuba, Huedo-Medina spent much of her time forging connections. The longtime rocky relationship between Cuba and the U.S. presented a challenge in that arena. The decades-old U.S. embargo of the country made some Cubans understandably uneasy about working with a U.S. institution. People were friendly, though, and Cuban academics and researchers got the necessary permissions from higher-ups in their organizations to work with her and the UConn team. A shared desire for finding and communicating better preventive health care strategies put them on the same page.

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    Collaboration

    During each visit, Huedo- Medina connected with more Cubans and recognized more opportunities for other UConn faculty to get involved. Last spring, she and a team from UConn met with Cuban scientists in Havana. They brainstormed collaborative research projects around the modeling of data for efficient health policies and promotions. One project they hope to get under way soon involves the prevention of alcohol and tobacco abuse.

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    En Español
  • Staying in College to Help Others Graduate

    Staying in College to Help Others Graduate

    Staying in College to Help Others Graduate

    Mentors and guidance counselors helped Erik Hines, an assistant professor of educational psychology, find his path. Now he is paying it forward.

    by Julie (Stagis) Bartucca ’10 (BUS, CLAS)
    photos by Peter Morenus

    “All I think about now is solutions for improving the graduation rate for black males.”

    Erik Hines is passionate about helping black male students succeed at UConn. The assistant professor in the Neag School of Education says he is on a mission to help attract and retain African-American male students.

    As faculty director of the new learning community ScHOLA²RS House, Hines hopes to gain a deeper understanding of the variables that influence positive academic and career outcomes for black males, the subject at the heart of both his day-to-day counseling work and his academic research. (ScHOLA²RS stands for Scholastic House of Leaders in Support of African-American Researchers & Scholars).

    “He is all in,” says Sally Reis, the former associate provost who brought Hines in to work on the newest of the University’s learning communities. “He is completely dedicated to these young men, focused on their graduation from UConn and their success in graduate school and work. He is passionate, committed, and a remarkably strong mentor.”

    Born and raised in Tampa, Hines decided to become a school counselor while attending community college there. He went on to earn his bachelor’s in social science education at Florida State University, his master’s in education for school counseling at the College of William & Mary, and his Ph.D. in counselor education at the University of Maryland. He joined the UConn faculty in August 2014.

    Hines says he is doing the work he set out to do at age 19. “My career feels purposeful, fulfilling, and empowering. All I think about now is solutions for improving the graduation rate for black males, recruitment of black males in STEM and career fields in which they are underrepresented, and how we help first-generation and other vulnerable populations be successful, too.”

    We caught up with Hines over the summer in his Gentry Building office, which overlooks a grassy, tree-lined knoll next to The Benton.

    Erik Hines

    “We want to cultivate all of our students to be the best and brightest.”

    Erik Hines

    Hines teaches his students how to use data to identify areas that need improvement and discover ways to make those improvements. He says he does the same thing when developing programming as faculty director for ScHOLA2RS House, a living-learning community for black males.

  • UConn: The Heart of Hartford

    UConn: The Heart of Hartford

    UConn:
    The Heart
    of Hartford

    Restoring the grand Hartford Times building is just the beginning of what having UConn back in downtown Hartford will mean for the city. The energy these students bring will be “a complete game changer.”

    By Rand Richards Cooper | Photos by Peter Morenus

    The past half-century has not been kind to Connecticut’s capital. Against a fading memory of Hartford in its heyday ”” a cultural and commercial center that drew visitors from all over New England ”” the city languished. Thriving cities exert a gravitational force on communities around them, pulling people in. But in Hartford the force dwindled. City planners razed old neighborhoods, laid down highways to facilitate suburban access, and built gleaming office palaces. Over time the city center became a place that emptied out at 5 p.m. Fewer people came in at night and on weekends. Downtown effectively died. 

    This is a test of the beaver builder update. Anyone hoping to revitalize a city’s downtown faces a stubborn paradox. To get people there, you need amenities. To justify and attract amenities, you need people. How to break into that cycle and restore a city’s gravitational force?

    In August a key piece of the puzzle clicked into place, with the opening of the University of Connecticut’s Hartford campus. UConn’s former West Hartford branch now occupies a stretch of Prospect Street, parallel to Main Street, reaching from the Hartford Public Library north to Constitution Plaza and the UConn School of Business. The move installs some 3,400 students, faculty and staff in the heart of downtown’s Front Street district, alongside the Wadsworth Atheneum, City Hall, the Public Library, the Travelers, and the Hartford Club.

    For University President Susan Herbst, the decision to relocate was a no-brainer. “When I came to UConn and heard that the Greater Hartford campus was actually in West Hartford, I was surprised and, frankly, disappointed.” With the campus experiencing dilapidation and facing a multimillion-dollar overhaul, the time was right for a move. Herbst knew exactly where UConn needed to go.

    “We really wanted to bolster our connection to the city and be part of the resurgence of Hartford,” says Herbst. She points out that before opening the suburban campus in 1970, UConn had been in Hartford, occupying several different locations, going back nearly a century. “So this is really a homecoming for us.”

    The project was a big push, Herbst admits. “Let’s face it, people don’t like to move. But I have been stunned by the gush of positivity and enthusiasm for doing this.”

    panoramic of city of Hartford

    Main UConn building

    Hartford Public Library

    Wadsworth Atheneum

    Travelers Tower

    Constitution Plaza

    Connecticut Science Center

    Front Street

    Connecticut Convention Center

    A College Town

    “The UConn campus is a game changer for the city,” says Matt Ritter, a Hartford state representative and the House Majority leader. “Adding thousands of young people downtown will bring an energy we haven’t seen in some time.” Hartford Mayor Luke Bronin says the move is crucial to the city’s “long-awaited revitalization; the new students will be a big part of making Hartford a more lively, vibrant place.”

    To get why Hartford is so excited, you have to understand the special, galvanizing role colleges and universities play in boosting a city’s dynamism. Students are often the first wave of an urban renaissance. Visit any number of thriving medium-sized cities across the country, from Providence to Asheville to Boulder, and you instantly see and feel the vitality supplied by students and recent graduates. Where they pop up, restaurants, galleries, and entertainment venues soon follow.

    And eventually companies do, too. “Bringing UConn into Hartford is an obvious and necessary thing to do,” says Bruce Becker, an architect and developer who converted the former Bank of America building into apartments at 777 Main, a short walk from the new campus. Becker is currently in discussion to relocate a suburban company to retail space in his building. “The only reason they’re thinking about it is the growing reputation of Hartford as an attractive place to work,” he says.

    For years, Hartford residents have glanced peevishly at Providence or New Haven and said, “Well, if you took a world-class university and put it down in the middle of our city, we’d look pretty good too!” And while that hasn’t happened in one fell swoop, Hartford has been assembling a higher-education corridor at its center, one piece at a time. Trinity College is moving a graduate program to Constitution Plaza, partnering with Capital Community College, located in the refurbished G. Fox building just up Main Street. The University of St. Joseph has its pharmacy school nearby. There’s Rensselaer Polytechnic’s Hartford campus. And now, capping it off in a big way, is UConn.

    UConn students, a large majority of them from Connecticut, represent the next generation of homegrown professionals ”” exactly the people a city like Hartford needs to attract. In this sense, the downtown campus represents an urban field of dreams: If you build it, they will come. And if they like it, they will stay.

    “We want that 7-year-old to be able to go up, hands pressed against the glass, and see what that student is doing.”

    UConn Hartford PUBLIC Library Director michael howser

    “We want that 7-year-old to be able to go up, hands pressed against the glass, and see what that student is doing.”

    UConn Hartford PUBLIC Library Director michael howser

    MAKING CITIZENS

    The centerpiece of that field of dreams is the remarkable new building UConn has created from the former Hartford Times offices. The Times was a daily paper that operated, in fierce competition with the Courant, from 1817 to 1976. Built in 1920, the Beaux-Arts building that housed it for the last half-century of its run was itself already a novel reclamation project. Its architect, Donn Barber, who also designed the iconic Travelers Tower across the street, salvaged granite columns, massive oak doors, and marble steps from the Madison Square Presbyterian Church in Manhattan. He redeployed these elements in the Times’ monumental portico, conferring a sense of the sacred. The high walls of the portico’s arcade are decorated with murals depicting allegorical figures for Poetry and Prose, Time and Space, Insight and Inspiration.

    Preservationists have long viewed the Hartford Times building as a treasure, and shuddered at the thought of its demolition. Its importance is more than mere architectural beauty. Buildings like this are a city’s “good bones.” They carry the city’s stories in them, forming enduring points of civic reference. Four U.S. presidents spoke from the terrace of the Times building ”” including John F. Kennedy, who gave the final speech of his 1960 campaign, one day before he was elected. “We preserve historic buildings because they give us a sense of our past and tie that past to us,” says Sara Bronin, an architect and UConn Law professor who chairs Hartford’s Planning and Zoning Commission (and is the wife of Mayor Luke Bronin.)

    From the start, Susan Herbst was committed to saving the Times building, viewing it as a way for UConn to honor the state’s history while situating the university’s new campus in the cultural, governmental, and business nerve center of the city. Herbst also perceived an institutional continuity with a newspaper whose offices lauded “Insight” and “Inspiration.”

    “The building is very high-minded,” she says with obvious enthusiasm. “It really fits with our own public mission as a university dedicated to making citizens.”

    Preserving it was not simple. The renovation involved shearing off the old structure’s facade and wings, then joining them to a roughly 140,000-square-foot new building. To do the job, UConn hired RAMSA, the renowned New Haven and Manhattan based firm headed by Robert A.M. Stern, former Dean of the Yale School of Architecture, whose resumé includes Yale’s recent $500 million expansion. “Stern is a really talented designer,” says Sara Bronin. “He’s known for neo-traditional institutional buildings, and that’s why he was the right choice for this project. It’s a super flashy project for our city.”

    The building, with its bold neoclassicism, offers plenty of wow factor. Students entering from Prospect Street ascend one of two winding staircases and pass through giant arched doors to an interior that matches the facade for grandeur. At the center is a three-story high atrium, naturally lit via a steel-and-glass facade to the south, with massive square limestone columns girding the space and adding to its imposing beauty and strength. Mezzanines look down over a student collaboration area, on an elevated platform beneath circular halo lights, to the terrazzo floor below, where students will hang out. “It’s equipped in state-of-the-art ways that reflect how people learn,” says Herbst, adding with a laugh, “let’s just say that there are a lot of outlets!”

    The five-story building houses classrooms and labs, meeting and work areas, and faculty and administration offices. The atrium opens to a south-facing courtyard, landscaped with trees and grass. Oversized windows in the science labs offer views so enticing, one worries about experiments gone awry. Faculty offices on the top floors boast panoramic vistas of city and countryside. A wood-paneled conference room overlooks the atrium through floor-to-ceiling windows. It’s a soaring building, bright with natural light. Says James Libby, UConn’s Design Project Manager for the campus: “We’re setting a new standard for how these buildings look.” Architect Bruce Becker agrees. “This is a flagship type of building,” he says. “It brings a whole new educational institution not of the scale of Yale, but of the quality.”

    The Zachs Atrium
    President Herbst and Director Mark Overmyer-Velazquez

    “The city has a lot to offer … This building represents a big investment for UConn and for the state. It’s worth it. And it’s forever.”

    UCONN President Susan Herbst

    UConn President Susan Herbst and UConn Hartford Director Mark Overmyer-Velázquez in a fifth floor meeting space. The orange through the window is the iconic Alexander Calder “Stegosaurus” statue.

    Taking it to the streets

    When you tour the new building, with all its gleaming amenities, you’ll notice something that is not there: a place to eat. This omission-by-design is intended to send hungry students out into the neighborhood, and reflects lessons learned in other, similar relocations.

    “We don’t want our building to be a vault,” says Herbst. “I decided early on, no food service in the building. We must have students out on the street!”

    Students out on the street: the phrase surely has a different valence than it would have had fifty years ago, and its significance is not lost on Jamie “The Bear” McDonald, the barbecue impresario whose five Hartford-area restaurants include two in the Front Street business zone adjacent to the new UConn campus. McDonald says that the new building’s lack of food and function spaces will benefit hotels and restaurants in the vicinity. “We can do the catering for small-group functions, faculty meetings, and the like. That’s the key thing about the new campus ”” it’s not an island. It’s integrated with the community, and we’ll get the benefit.”
    The new campus has been planned and designed to maximize connection to the neighborhood in a host of ways. Students use the same parking garages everyone else does. Ground-floor retail spaces in the main building open both to the street and to the atrium. At the campus’s southwest corner, a grand plaza welcomes the Hartford community and links diagonally to the landscaped courtyard, also publicly accessible. The Barnes & Noble UConn, the first bookstore in downtown Hartford in many years, occupies the ground floor of the Front Street Lofts across the street. A new CVS is in 777 Main, a few blocks away. Lectures and perhaps classes will be held in the Atheneum across the street. Large-scale events can use the Infinity Hall concert venue or the Science and Convention Centers just down the street. And discussions are underway for a plan whereby students can use Husky Bucks at neighborhood businesses.

    The emphasis on community is especially fitting for the School of Social Work, which moved into a stately brick building at 38 Prospect Street early this summer. “Being in downtown Hartford will make it really easy to connect with organizations,” notes Lauren Chapman, a 23-year-old graduate case-work student from Hebron. Chapman believes that the campus’s setting makes it more than a mere commuter school. “People will stick around and use the area, both between classes and after. You couldn’t do that at West Hartford. Here people can go into a restaurant or cafe or bar and socialize, or get some work done. It’s conducive to that.”

    These sentiments are echoed by Chapman’s teacher, social work professor Lisa Werkmeister-Rozas. “It was always strange for us to be in a suburban setting,” she observes. “Our students are dealing with urban populations, and now they can see the everyday situations that their clients talk about. I think it will be a really important learning experience.” The move is practical, Werkmeister-Rozas says, since many social-work internships are based in the city. “And from a pure advocacy perspective, being able to participate in the renewal of Hartford is a good thing.”

    No feature of the new campus better illustrates the town-gown symbiosis than the arrangement with Hartford Public Library, where a $4 million renovation will facilitate use by as many as 1,000 students a day, with classes taking place in several new classrooms. UConn students will enter via the Arch Street entrance, passing a massive 1870 Colt’s Universal Platen Press. Inside, they’ll find an impressive array of more contemporary information technologies, like a video studio where professors can record lectures using a virtual blackboard, or the Digital Scholarship Studio, where up to 12 screens can be mosaiced together so that research teams can compare data dashboards.

    Library staff on both sides are thrilled about the joint effort. “We’ve been focused on collaboration from day one,” says UConn Hartford Public Library Director Michael Howser. Brenda Miller, who heads the Hartford History Center at HPL, lists the contributions UConn has already made, from a baby grand piano for the library’s popular jazz series, to support for a Learning Lab, to a new storage unit to house the library’s historical collection. The partnership will enable a broad array of events and programming, like a recent series of discussions on the founding documents of American democracy, developed with UConn’s Public Humanities Institute and the Wadsworth Atheneum. Already the library has hosted a drop-in writing workshop conducted by a UConn professor, where city residents could bring in a poem, resume, or application letter and get help with it.

    The new spaces in the library have been configured to spur interaction between UConn students and the general public. “There’s no bouncer at the door, no gatekeeper,” says Howser. “We want to be open and welcoming.” Anyone with a Hartford Library card can borrow from UConn’s books. The new layout offers joint study areas and classrooms; there’s a conference room with glass walls on both sides, making it totally transparent. “We want people to see the students in action,” says Howser. “We want that 7-year-old to be able to go up, hands pressed against the glass, and see what that student is doing.” In addition to the many tangible benefits, the UConn presence will offer a standing role model for urban kids from non-college-educated backgrounds.

    “Hartford Public Library is a cornerstone of democracy, open to anyone,” observes the library’s Director of Communications, Don Wilson. “But the one segment we haven’t had en masse is college students. There’s an ecosystem here, and when students are introduced into that, both sides will benefit. I’m very excited to see what happens.”

    The Barnes & Nobel UConn bookstore

    Going Up

    And so are Hartford residents ”” excited not merely about the library, but about the overall impact of UConn. Those of us who have lived here over the last 20 years can recite a litany of losses and failures, indignities and dashed hopes. The demoralizing departure of the city’s only major-league sports franchise, the NHL Whalers, and the subsequent sorry attempt to lure the Patriots. The ouster of a mayor charged with corruption. The city’s designation, at one point, as the second poorest in the U.S., after Brownsville, Texas.

    Amid such slings and arrows, hope has always persisted, and we have eagerly reached for Mark Twain’s celebrated line about reports of one’s death being greatly exaggerated. Now, at last, the quip seems apt. Hartford faces significant ongoing challenges, but signs of a downtown resurgence abound, reflected in rising rents and real-estate values, new residences with high occupancy rates, flourishing restaurants, and the success of citizen initiatives such as Riverfront Recapture. Months ago the historic Goodwin Hotel re-opened after nearly a decade. Come next year, true commuter rail will connect the city efficiently to New Haven, and by extension New York. Meanwhile, painters and sculptors, designers, photographers, and other arts and entertainment entrepreneurs are incubating small-business ideas and energies. From Coltsville to Dunkin’ Donuts Park, a rejuvenation is underway. UConn’s new campus puts a gleaming seal on the deal.

    “Lively, diverse, intense cities,” wrote Jane Jacobs in her influential 1961 book, The Death and Life of American Cities, “contain the seeds of their own regeneration.” Jacobs insisted that restoring a city’s gravitational pull means building on what is already there ”” developing precious resources, rather than trying to obliterate them and start anew. That effort is the essence of the new Hartford campus. It represents the state’s commitment to deploy the knowledge economy in boosting its capital city’s vitality while building on its tradition.

    The benefit promises to be mutual. For UConn students, Hartford provides another option, one that will excite those eager for an urban experience and all it involves. “The city has a lot to offer,” says President Herbst. “We needed a stronghold there.” Anchoring that stronghold is a building she calls a metaphor for excellence.

    “This building represents a big investment for UConn and for the state,” she says. “It’s worth it. And it’s forever.”

    Chemistry lab
    Hartford Mayor Luke Bronin

    “the new students will be a big part of making Hartford a more lively, vibrant place.”

    hartford Mayor luke bronin

    Rand Richards Cooper’s writing has appeared in Harper’s, Esquire, The Atlantic, and The New York Times. Cooper, who is a contributing editor at Commonweal, lives with his wife and daughter in Hartford and writes a monthly column, “In Our Midst,” for Hartford Magazine.
  • Tom’s Trivia

    Tom’s Trivia

    Challenge yourself to Tom’s Trivia!

    See if you know as much as King of UConn Trivia and University Deputy Spokesperson Tom Breen ’00 (CLAS).

    Scroll to the bottom to reveal the answers.

    Tom's Trivia

    In May 1970, hundreds of students occupied the ROTC hangar on campus and staged a “paint-in” because they wanted the building converted to what?

    A: A center for peace studies
    B: A day care facility
    C: A student recreation center
    D: Communal housing for male and female students

    The UConn men’s basketball team made its first NCAA tournament appearance on March 20, 1951, in a game that had so many UConn students in attendance a special train from Willimantic to New York was chartered. Who defeated the Huskies on that occasion?

    A: St. John’s
    B: Georgetown
    C: Boston College
    D: Syracuse

    The Josephine Dolan Collection at the School of Nursing includes everything from period medical uniforms to a 500-pound iron lung. Who was Josephine Dolan?

    A: UConn’s first dean of nursing
    B: An alumna of the nursing school
    C: The first nursing instructor at UConn
    D: A Connecticut nurse who traveled the world collecting medical artifacts

    Between the end of World War II and the mid-1950s, an area on the north side of campus became known as “Oil Can Alley.” What was this area used for?

    A: The university motor pool
    B: Experiments by the School of Engineering
    C: Construction equipment storage
    D: Faculty housing

    Nursing School

    Nursing students in a dissection course circa 1946. The program is celebrating its seventy-fifth anniversary.

    Answers

    1. B. About 200 students painted the interior and exterior of the building in a “daycare” motif, demanding the ROTC be evicted from the premises. Days later, around 300 students volunteered to repaint the building in its original color scheme.
    2. A. UConn fell to St. John’s by a score of 63-52. The game began a long association between UConn and Madison Square Garden, though, and when Jonathan IV was led into the famous arena for the game against St. John’s, one sportswriter wrote the dog received the loudest ovation of any mascot in Garden history.
    3. C. The School of Nursing opened at UConn in 1942 with 13 students. Dolan was the first full-time instructor, teaching for over 35 years, and donating her extensive collection of documents and artifacts to the School of Nursing in 1996. Permanent and rotating exhibits are on display in the school’s Widmer Wing
    4. D. Located behind a heating plant, a series of four-room apartments with insufficient heating and children’s playground dangerously close to North Eagleville Road, the temporary faculty houses here were a product of the rapid expansion of the university after the war, and were gone by 1956.

  • UConn in the Media

    UConn in the Media

    UConn Talks

    On pot & peppers:

    “A common link between chili peppers and marijuana has implications for how we treat diabetes and colitis, as well as other conditions in the digestive tract.”

    Huffington Post on a study by Immunology Professor Pramod Srivastava, April 26, 2017

    On vending machines programmed to promote healthy snacks:

    “There is a risk that people would get upset with the delay because people know it’s just to influence their behavior.”

    Marlene Schwartz, director of the Rudd Center, on NPR, March 31, 2017

    On the lack of physiological proof that men’s flu symptoms are worse than women’s:

    “Maybe men just get whinier.”

    Laura Haynes, immunologist, in STAT, March 2, 2017

    On cellphone addiction:

    “People are carrying around a portable dopamine pump, and kids have basically been carrying it around for the last 10 years.”

    David Greenfield, assistant clinical professor of psychiatry, in The New York Times, March 20, 2017

    On more E.R. visits tied to energy drinks:

    “. . . energy drinks are highly marketed to adolescent boys in ways that encourage risky behavior, including rapid and excessive consumption.”

    Dr. Jennifer L. Harris, UConn’s Rudd Center for Food Policy and Obesity, in Reuters, April 26, 2017

    On the fact that Puerto Ricans are U.S. citizens:

    “In a recent poll, 41 percent of respondents said they did not believe that Puerto Ricans were U.S. citizens, and 15 percent were not sure.”

    Charles R. Venator-Santiago, associate professor of political science, in Time, March 5, 2017

    On predicting the future using cliodynamics:

    “My model indicated that social instability and political violence would peak in the 2020s.”

    Peter Turchin, professor of ecology and mathematics, Daily Mail, Jan. 5, 2017

    On checking heart rate data from an exercise monitor:

    “She may have died if she hadn’t checked her Fitbit.”

    Dr. JuYong Lee, UConn John Dempsey Hospital, on NBC’s “Today Show,” April 6, 2017

    On creating fake news:

    “Denial always starts with a cadre of pseudo-experts with some credentials that create a facade of credibility.”

    Seth Kalichman, professor of psychology, in New Scientist, March 23, 2017

    On treating a broken heart:

    Believe it or not, Broken Heart Syndrome is a real phenomenon . . . it presents similarly to a heart attack . . . and often is precipitated by an emotionally or physically stressful life event, such as a loss of a loved one.

    Dr. Sara Tabtabai, Pat and Jim Calhoun Cardiology Center at UConn Health, Health News Digest, Feb. 9, 2017

  • Free to Be Imperfect

    Free to Be Imperfect

    Free to Be

    Free to Be

    Free to Be

    Imperfect

    Imperfect

    Imperfect

    A beloved doctor’s patients convince him to move to UConn Health ”” where he plans to cure a rare liver disease

    By Julie (Stagis) Bartucca ’10 (BUS, CLAS)
    Photos by Peter Morenus

    Alyssa Temkin, age 11, pauses in the middle of a school basketball game to test her blood sugar.

    Imagine not being able to fall asleep watching your favorite movie because you might not survive the night. Or waking up every 90 minutes to make sure your daughter’s feeding pump is keeping her sugar stable enough that she won’t slip into a coma. Or dropping everything 16 times a day to test your blood and drink a formula that’s the caloric equivalent of half a pound of pasta. Or feeling hopeless about keeping your newborn twins alive because they can’t process food and no one can help.

    Gayle Temkin, a mom of two from West Hartford, hasn’t slept more than two hours at a time for 11 years. Her daughter, Alyssa, stops what she’s doing ”” dancing, guitar lessons, acting in a play, playing on her school’s basketball team ”” every 90 minutes to test her blood sugar and drink a special formula.

    For more than a year after giving birth to her twin boys, Kathy Dahlberg waited for liver transplants that could save them.

    Not long ago, a 13-year-old ”” who we won’t name to protect his family’s privacy ”” fell asleep in front of the TV, missed his therapy, and died.

    All are victims of Glycogen Storage Disease (GSD), a rare genetic liver disorder that leaves patients slaves to the clock because the only known treatment is taking a cornstarch mixture every few hours or less, depending on the patient. It’s a world where one mistake can be fatal.

    GSD affects only 1 in 100,000 people worldwide and long was considered a childhood illness because patients did not survive into adulthood. The life-saving cornstarch treatment that was discovered in the 1970s changed that, yet little progress in treating the disease has been made since. And then Dr. David Weinstein entered the picture.

    Weinstein, who in January moved his world-renowned GSD program from the University of Florida to UConn Health and Connecticut Children’s Medical Center, has spent the past two decades researching the disease. He’s the only doctor in the world dedicated to the illness, and is so beloved that his patients nominated him for the Order of the Smile, an international humanitarian award he shares with the likes of Oprah and Nelson Mandela. And now they have more reason to applaud him: He’s closing in on a cure.

    Weinstein and his team are on the verge of testing in a human clinical trial the first GSD gene therapy, which has worked for canines and mice with the illness. For the patients and their families who live in a constant countdown to the next feeding, the new therapy would mean freedom. A normal life, where mistakes can be made. Where they no longer have to be perfect.

    For Alyssa and mom Gayle, a typical day of trying to be as normal as possible involves Gayle at school in a room near the office, staying in touch with her daughter by walkie-talkie. Alyssa tests and doses herself in class, gym, and while playing on the school’s athletic teams. But GSD patients don’t feel the effects of low blood sugar until they are moments from a seizure, so Gayle stays close around the clock. Lily, 9, likes to tag along to appointments with Weinstein. “He’s her hero ”” he saved her sister,” says Gayle.

    Fatal Mistakes

    “The problem with this disease is that people need cornstarch every four hours. People have died because their parents overslept,” says Weinstein. One missed alarm and a patient could die. A malfunctioning piece of medical equipment could mean a dangerous seizure.

    In a healthy liver, excess sugar from food is stored as glycogen and released into our bloodstreams when we need it as glucose. For those with GSD, the liver fails to convert glycogen into glucose, causing the body’s blood sugar levels to drop dangerously low, which can lead to seizure or death.

    “One of the parents was giving a talk recently and said, ”˜Do you know what it’s like to have to be perfect all the time?’” Weinstein says. “And that’s what these families live with. It’s extreme stress.”

    Weinstein and his team have made great strides. When he started studying GSD, the only long-term treatment was a liver transplant to combat complications. Now, patients are doctors, athletes, mothers ”” more than 50 babies have been born to mothers with GSD since the first in 2003. But they still live under constant pressure. The disease is relentless, unforgiving.

    When Gayle and Steve Temkin brought baby Alyssa home from the hospital at three days old, Gayle knew something was wrong with her daughter. By the time they got to a hospital that night, Alyssa was in full liver and renal failure. Her sugars were undetectable. Without intervention, she wouldn’t survive an hour, doctors said.
    It was six months, several hospitals, countless invasive tests, and second and third opinions before Alyssa was diagnosed with GSD at Mount Sinai Hospital in New York City.

    Alyssa is now 11, a smiling, soft-spoken sixth-grader who enjoys playing sports, acting in plays, and learning to play guitar and dance. She gets good grades and loves her friends. But every 90 minutes, every single day, she must check her blood sugar and drink Tolerex, a special formula that keeps her sugar up. Alyssa is the only known GSD patient who can’t tolerate cornstarch, and Tolerex doesn’t last as long, so the time between her treatments is even shorter than it is for most GSD patients.

    While the Temkins do everything they can to make Alyssa’s life normal, there are constant reminders that it is anything but.

    During the night, a pump attached to a feeding tube in her stomach feeds Alyssa dextrose (which is less filling than Tolerex, but metabolizes faster). Her parents wake up every 90 minutes to check her sugar, but her feeding is done automatically through the pump.

    Gayle spends every day at Alyssa’s school. For years, she would go into the classroom to feed Alyssa, first through her feeding tube and, more recently, with a drinkable formula. This year, Alyssa has gained some freedom. An Apple Watch reminds her when it’s time to test her blood and drink, and she reports her sugar level to her mom via a walkie-talkie. Gayle, a former social worker, stays close, just in case.

    If Alyssa’s sugar gets too low, she doesn’t feel it. Unlike most people, GSD patients don’t feel shaky or get headaches when their sugar drops ”” at least not until it’s too late. By then, they could be moments from having a seizure.

    “I sit in her school all day,” says Gayle. “I have a master’s. I’m a social worker. But I do what I have to do.”

    Because she knows too well what can happen.

    In February 2015, the family had returned from a trip to Italy and decided to “camp out” together in the same room. As Gayle and Steve dozed off, Lily Temkin, 9, stayed up, reading, unable to fall asleep.

    “I hear Lily saying, ”˜Alyssa, come on, want to play with me? Alyssa, you want to read with me? Alyssa, Alyssa.’ And then, screaming,” recalls Gayle.

    Alyssa’s pump had stopped working. She was having a seizure and remained unconscious at the hospital.

    “David [Weinstein] stayed on the phone with us the whole time,” says Gayle. “He was booking a flight to Connecticut. We really thought he was going to be coming for a funeral.

    “There is nothing about this disease that’s forgiving. It doesn’t matter what regimen you’re on; it could be a bad batch of something. We think we’re doing everything right, and the pump malfunctions.”

    “There was no research going on anywhere in the world on this disease. And if there’s no research, that means there’s no hope.”

    Temkin with Dr. Weinstein

    Dr. Weinstein has treated Alyssa since she was six months old. The Temkins were instrumental in bringing him to Connecticut, where he is about to begin human clinical trials of a gene therapy they all hope will lead to a cure.

    Research = Hope

    Weinstein had no intention of dedicating his life to curing GSD. As a young physician at Boston Children’s Hospital specializing in sugar disorders in 1998, he was caring for just two patients with GSD when he was invited to a national conference of the Association for Glycogen Storage Disease.

    “I showed up at this meeting and was shocked by what I saw,” he says. The conference started with a moment of silence and a reading of the names of all the children who had died from GSD that year. The research presented was decades old. And the only treatment option being discussed was liver transplantation to combat complications from the disorder.

    “There was no research going on anywhere in the world on this disease,” Weinstein says. “And if there’s no research, that means there’s no hope.”

    A conversation with a mother there changed the course of Weinstein’s life. Knowing no one at the conference, he sat down for lunch next to Kathy Dahlberg, who had one-year-old twin sons already on the liver transplant list. She told Weinstein how sick her children were, and that her only hope was that they’d live long enough to get their liver transplants. Weinstein had a son at home a month younger than the twins.

    “Over lunch at that conference, I decided that somebody had to care about these children. The children shouldn’t have to suffer just because it was a rare disease,” Weinstein says. “The world didn’t need another diabetes doctor. This is where I could make a difference.”

    As soon as he returned to Boston, Weinstein shifted his research focus to GSD and built the program there before moving it to the University of Florida in 2005 in order to work with the veterinary program. He has successfully treated dogs with his gene therapy, turning a fatal disease into one where dogs born with GSD are thriving.

    Today, Weinstein sees 500 patients from 49 states and 45 countries. With help from Alyssa’s Angel Fund ”” started by the Temkins when Alyssa was a baby ”” and other charities, he has established centers all over the world.

    “The world didn’t need another diabetes doctor. This is where I could make a difference.”

    “The world didn’t need another diabetes doctor. This is where I could make a difference.”

    All the Way

    It was in her “little room” at Alyssa’s school that Gayle Temkin started toying with an idea.

    Sure, the charity her family started had enabled 100 patients to see their hero doctor. It had sent supplies to those in need and helped Weinstein establish centers to see patients and train doctors all over the world.

    But to accomplish the grand goal, to cure GSD, Temkin thought there was another thing she could do.

    She wanted Weinstein to come to Connecticut.

    Early last year when Weinstein was in the state for a speaking engagement, Gayle brought together a group in her family room that included prominent Hartford-area philanthropists Alan Lazowski, Eric and Jessica Zachs, and Pia and Mickey Toro. A 2012 fundraiser hosted by Lazowski had raised $470,000 in one night to support Weinstein’s research, and she wanted to provide an update on the work and how close the gene therapy was to being a reality. But the group also had come on board to push Gayle’s idea of having the doctor move to Connecticut.

    It became “almost like an intervention,” she says with a laugh. “We gave him a safe space to talk about what was working, what needs to be different, and what he thinks he can do with the program. We really wanted him to see what it’s like to have a community really embrace him. We made him understand this is where he needs to be.”

    The group tapped into connections at UConn and Connecticut Children’s. Within hours, Weinstein was on the phone with UConn School of Medicine Dean Dr. Bruce Liang. From there, the wheels were set in motion.

    In January, the GSD lab moved to UConn Health’s Farmington campus. At the same time, a clinical and research unit supported financially by the Temkins and other local philanthropists opened at Connecticut Children’s. Gayle Temkin, Alan Lazowski, and Barry Stein are the trustees for the Global Center for Glycogen Storage Disease, and through the new organization will continue to raise money to support Weinstein’s program. They are working to set up other forms of assistance for patients and their families, including a closet with free supplies at the clinic, and support programs for families once the clinical trials start.

    Because GSD patients are now surviving well into adulthood, the partnership between the two institutions makes great sense. “We’re much stronger working together,” says Weinstein.

    Although Weinstein is the only doctor in the world dedicated to curing GSD, he says he’s not doing it alone ”” far from it.

    “I’ve never seen a program like ours. I only do one disease. Everybody on my team does just one disease,” he says. “This is personal. Most people have a connection to the condition, and so they’ll work until everything’s done. It’s just a dedication that I’ve never experienced anyplace else.”

    The bulk of Weinstein’s Florida team came to Connecticut with him. His team includes GSD patients and parents, including several who have called him out of the blue to tell him all they want is to work with him.

    One, who moved to Connecticut from Minnesota to join the new center, is Kathy Dahlberg, the mother who changed Weinstein’s course all those years ago. Her twins are now sophomores in college.

    And, after nearly two decades of dedicated research, Weinstein’s next step is the one he’s been working toward all along. Human safety trials of his gene therapy, in conjunction with Dimension Therapeutics in Cambridge, Mass., are expected to start this year. UConn will coordinate the trials with collaborating centers all over the world. Full-treatment trials should start in 2020.

    The ultimate goal for the gene therapy, according to Weinstein, is to prevent low blood sugars, eliminate the dependence on cornstarch, and give patients normal lives where oversleeping isn’t a worst-case scenario.

    “If we can accomplish that, we’ve come all the way,” he says.

    “He knew he could do this,” says Gayle. “It’s all of the pieces falling into the puzzle in the right direction; it’s really like a miracle.

    “When we first brought Alyssa to him, he said, ”˜By her bat mitzvah, by the time she’s 12 or 13, we should be able to cure her.’ And she’s 11,” she says. “We’re almost there.”