@umasschan magazine winter 2023-24

‘They

UMass Chan Medical School is the commonwealth’s first and only public academic health sciences center, home to three graduate schools. Our mission is to advance the health and wellness of our diverse communities throughout Massachusetts and across the world by leading and innovating in education, research, health care delivery and public service.

Land acknowledgment

UMass Chan Medical School acknowledges that its campus is located on lands that were once part of the original homeland of the Nipmuc people. We denounce the violence that stripped these original stewards of lands that were their ancestral home and denied their descendants the opportunity for an authentic connection to it. In making this acknowledgment, we announce our intention to listen to and follow the lead of our Indigenous neighbors and work together to create new legacies of equity and respect.

COVER PHOTO BY FAITH NINIVAGGI

Celebrating collaboration, UMass Chan launches ‘Advancing Together’ brand

Above: At the Advancing Together launch event, members of the UMass Chan community were invited to share how they are advancing the mission together. Hundreds responded.

Collaboration and collegiality are the qualities that help UMass Chan Medical School advance innovation; attract some of the world’s greatest minds; and train the next generation of physicians, nurse leaders and scientists. On Sept. 6, faculty, staff and students gathered to celebrate the launch of UMass Chan’s new brand, Advancing Together.

Activities took place in the lobbies of the Medical School building and Albert Sherman Center, where selfie and button-making stations were set up, along with giveaway tables and an invitation to members of the UMass Chan community to share stories of how they are advancing the UMass Chan mission together.

“We have the opportunity to attract learners, faculty and staff who could really go anywhere in the world. But they choose to come here because the culture of collaboration is something they see from the very beginning,”

Chancellor Michael F. Collins said.

“The ability to change the course of the history of disease is right before us. The faculty come together knowing that. They come to a place where they can dream again, where they can know that they’re going to be among the finest minds that exist anywhere in the world, and where each person in the community cares for the other. That’s a very special place to be.” ■

“

We have the opportunity to attract learners, faculty and staff who could really go anywhere in the world. But they choose to come here because the culture of collaboration is something they see from the very beginning.

CHANCELLOR MICHAEL F. COLLINS

Clockwise from upper left: Medical students Sahana Bail and Karen Ghobrial in front of the campaign logo.

Vice Chancellor for Diversity and Inclusion Marlina Duncan, EdD, takes a moment to peruse the Advancing Together brochure.

Jorge Sanchez of DIO and ForHealth Consulting with Carla Kath and Maria Isaacs of ForHealth Consulting.

Mallory Shelly, Joan Vitello-Cicciu, PhD, and Sue Collette from the Tan Chingfen Graduate School of Nursing are advancing nursing together.

“ Whether you’re delivering difficult news or delivering a baby, encouraging a patient to take their meds or checking their vitals, discovering a new drug for ALS or overseeing a promising clinical trial, you matter so much.

COURIC

UMass Chan celebrates 50th Commencement

UMass Chan Medical School welcomed graduates, family, friends, alumni and faculty to the campus green in June for the 50th Commencement, celebrating classes from the Tan Chingfen Graduate School of Nursing, the Morningside Graduate School of Biomedical Sciences and the T.H. Chan School of Medicine.

Katie Couric, former host of NBC’s Today Show and anchor of CBS Evening News, and co-founder of cancer research charity Stand Up To Cancer, was presented with an honorary Doctor of Humane Letters degree and delivered the Commencement address.

Couric shared her personal story of overcoming the tragic losses of her husband to colon cancer and her sister to pancreatic cancer, as well as her own battle with breast cancer. She encouraged graduates to challenge an inequitable health care system and to maintain a human connection with their patients, especially as technology in medicine continues to evolve.

“You are my heroes,” Couric said. “You save lives. Your work changes lives. You are there for others in times of great joy and times of tremendous sadness. Whether you’re delivering difficult news or delivering a baby, encouraging a patient to take their meds or checking their vitals, discovering a new drug for ALS or overseeing a promising clinical trial, you matter so much.”

Honorary degrees were awarded to Luke O’Neill, PhD, chair and professor of biochemistry at Trinity

College Dublin and trusted voice for science and public health in Ireland; and Tania Issa Semaan, chair of Blu Stone Management Ltd, and co-founder and director of The Semaan Foundation, a philanthropic organization supporting efforts in the fields of education, health care and social welfare.

Chancellor Michael F. Collins presided over the ceremony, presenting 151 Doctor of Medicine degrees, 10 MD/PhD degrees, 62 Doctor of Philosophy degrees,

KATIE

Left: Katie Couric delivered a warm, frank and humorous address that encouraged grads to challenge an inequitable health care system and maintain a human connection with their patients.

Above: Ayush Thomas celebrates after receiving his MD.

Across: Honorary degree recipients Katie Couric, Luke O’Neill and Tania Issa Semaan with Dean Terence R. Flotte (left) and Chancellor Collins (right).

five Master of Science in Clinical Investigation degrees, 54 Doctor of Nursing Practice degrees, three PhD in Nursing degrees, and one postgraduate certificate.

“There is a simple truth. Nursing, science and medicine at their best are what our graduates represent,” said Chancellor Collins, remarking on the extraordinary challenges many of the students faced when the COVID-19 pandemic hit within months of their arrival at UMass Chan. “Today, all of you are bound by an unmistakable realization that you have been changed by your time at this medical school and by once unimaginable challenges. Throughout our time together, we have been guided by a mission to change the course of the history of disease.” ■

Stole ceremony renamed to honor longtime diversity advocate

The UMass Chan chapter of White Coats for Black Lives and the Diversity and Inclusion Office presented vibrant stoles to graduating students of color at the Deborah Harmon Hines, PhD, Commencement Celebration on June 2.

Students from the three schools chose from two stole options made of Kente fabric from Ghana, West Africa, to wear at UMass Chan’s 50th Commencement.

While this UMass Chan tradition was established in 2021 by Abiola Ogunsola and Zach Dyer, MD/PhD students and co-presidents of the UMass Chan chapter of White Coats for Black Lives, this year the ceremony was named in honor of Dr. Hines, who retired as vice provost for school services and professor of radiology and nursing in 2017.

“Something isn't real until it has a name,” said Marlina Duncan, EdD, vice chancellor for diversity and inclusion, as she kicked off festivities. “This ceremony needed to have a name that exemplifies what it means to get to this level of success from an underrepresented and marginalized background. What name would exemplify strength, passion, perseverance, community and love? What name exemplifies that your dreams are no longer deferred? That name is Dr. Deborah Harmon Hines.”

JOHN GILLOOLY/PEI

ROB CARLIN

Above: Back row, left to right: Sarah Ferreira, Dalton Mourao, Dr. Hines, Xingchen Liu, Jen Velasquez, Badu Adjei. Front row, left to right: Linh Nguyen, Salome Funes, Kelly Garcia, Karina Michaela Del Mundo.

Milestone year for UMass Cancer Walk

More than 2,500 people took part in the 25th annual UMass Cancer Walk presented by Harr Toyota at Polar Park on Sept. 24. Participants raised nearly $750,000 to support adult and pediatric cancer research and clinical trials at UMass Chan Medical School.

Dottie Manning, co-founder of the walk, who has personally been touched by cancer, spoke before the event about what brings everyone together.

“I know you! And while I might not know your name, I know you and see you when I go for my yearly mammogram. I recognize your face in the grocery store, at the doctor’s office and see you going to school. I know you as someone who has or is dealing with cancer, possibly your own cancer, your family member’s, your loved one’s, or your best friend’s cancer,” Manning said.

Since its establishment, the UMass Cancer Walk has raised more than $16.7 million. ■

New education and research building nears completion

Left: The new education and research building under construction at UMass Chan in Worcester is now weather-tight and connected to the campus utility systems. Up to 300 people are working in the building daily to complete the labs, offices and common areas so the building will be ready to open in June 2024.

Above: Dean Terence R. Flotte; UMass Cancer Center Director Jonathan Gerber, MD; and UMass Cancer Walk co-founder Dottie Manning (front row from left) join the UMass Chan Cancer Research Team at Polar Park.

PHIL

SMITH

Convocation and Investiture celebrate symphony of collaboration at UMass Chan

In his annual Convocation address to the UMass Chan Medical School community on Sept. 14, Chancellor Michael F. Collins embraced the Medical School’s new brand, “Advancing Together,” and was supported by an ensemble of local musicians who helped illustrate the symphony of collaboration that exists across the UMass Chan campus.

“As we gather for this convocation . . . we are surrounded by the spirit of innovation and the pursuit of excellence,” Chancellor Collins said. “We are reminded of the transformative power of collaboration, which at UMass Chan is not a marriage of convenience, but a purposeful and intentional commitment to a greater good.”

A highlight of the ceremony was the announcement of the recipients of the 2023 Chancellor’s Medals for excellence in teaching, scholarship, service and clinical excellence. Additionally, four faculty members were invested into endowed chairs.

Andres Schanzer, MD, professor of surgery and population & quantitative health sciences and chief of the Division of Vascular and Endovascular Surgery, was invested as the inaugural Cutler Chair in Vascular and Endovascular Surgery. Michael A. Brehm, PhD, associate professor of molecular medicine, principal investigator of the UMass Diabetes Center of Excellence and co-director of the humanized mouse core facility, was invested as the inaugural Harvey A. Shultz Chair in Diabetes.

Sharon B. Cantor, PhD, professor of molecular, cell & cancer biology, was invested as the Gladys Smith Martin Chair in Oncology.

Vaikom S. Mahadevan, MD, professor of medicine and chief of the Division of Cardiovascular Medicine, was invested as the Edward Budnitz, MD, Professor in Cardiovascular Medicine. ■

Left: The 2023 Chancellor’s medal recipients, from left, are Kathryn Edmiston, MD, for clinical excellence; Jill Terrien, PhD, for distinguished service; Susan Zweizig, MD, for distinguished teaching; and Douglas Golenbock, MD, for distinguished scholarship, with Chancellor Collins, center.

Below: Newly invested faculty members Vaikom S. Mahadevan, MD; Sharon B. Cantor, PhD; Andres Schanzer, MD; and Michael A. Brehm, PhD, flanked by Dean Terence R. Flotte (left) and Chancellor Collins (right).

“

We are reminded of the transformative power of collaboration, which at UMass Chan is not a marriage of convenience, but a purposeful and intentional commitment to a greater good.

CHANCELLOR

MICHAEL F. COLLINS

JOHN GILLOOLY/PEI JOHN

Crista Johnson-Agbakwu’s focus on radical empathy builds lasting change

By Joanna Alizio

When Crista Johnson-Agbakwu, MD, the inaugural executive director of the UMass Chan Medical School Collaborative in Health Equity, was growing up in Connecticut, she saw few opportunities for Black girls interested in medicine. As a fourth grader, she became intrigued by science, but she said her educational path was blocked by a series of locked doors. In her high school, “they started replacing advanced placement English, calculus and biology classes with woodworking, carpentry, automotive and cooking classes,” because school leaders believed these classes better suited Black students whom they saw as not suited for college, according to Dr. Johnson-Agbakwu. With the help of vigilant and persistent parents involved in the local school system and surrounding immigrant community,

a new path emerged. “They were my champions in providing and nurturing me to get into those spaces to be exposed to medicine,” said Johnson-Agbakwu.

Johnson-Agbakwu’s early immersion in pipeline programs carried her on a journey toward earning a bachelor’s degree in biology from Johns Hopkins University, completing medical school at Weill Cornell Medical College and focusing her residency on obstetrics and gynecology at the George Washington University Medical Center.

Before graduating from Johns Hopkins, she received parting words from a mentor, Claudia Thomas, MD, the first female African American orthopedic surgeon in the United States, to “look beyond the work of serving individual patients and instead seek to get a seat at the table

where decisions are made that impact entire populations of color.” This concept has stuck with Johnson-Agbakwu throughout her career and serves as an anchor for her pursuits.

She has dedicated her life to helping underrepresented and immigrant communities and is a leader in creating successful and scalable models of care for women’s health. Her research into sexual and reproductive health equity for migrant women of color, published in the American Journal of Public Health, was one of the largest studies in the United States involving newly arrived Somali women with female genital mutilation/cutting.

As the founding director of the Refugee Women’s Health Clinic in Arizona, JohnsonAgbakwu guided the transformation of care delivery at a large safetynet teaching hospital, when 16,000 newly arriving refugees from more than 70 countries were brought into the health system over 15 years. The patients were welcomed by community health workers with the shared cultural congruence and lived experiences of forced displacement and migration, who were also certified medical interpreters speaking more than 18 languages.

She brings the same curiosity and empathy to her role at UMass Chan, where she will offer a safe space for the surrounding community to speak freely, reflect and share. “Part of that means reaching the community where they are. The other part is making sure we are intentional in how we are not only representing the community’s voice, but that we are inviting the community to be part of our team,” said Johnson-Agbakwu.

“Whether it’s a clinical care team or a research team, we need to make sure we are at the front, leading these engagements with the community so they can see us and have some kind of identity with us, an authentic connection that’s culturally congruent, linguistically congruent, and informed by the community’s lived experience and voiced concerns.”

“The work at the very core is recognizing our collective humanity and need for respecting those most vulnerable and having radical empathy and cultural humility.”

CRISTA JOHNSON-AGBAKWU, MD

The key to her success, she says, is to always begin by anchoring her work in the community.

“The work at the very core is recognizing our collective humanity and need for respecting those most vulnerable and having radical empathy and cultural humility in terms of how we approach care for the least of these,” she said. “You do that by having an authentic relationship with community that’s nurtured over time. It’s sustained, it’s cultivated and you honor the community’s voice. You make sure they are holding you accountable, you are representing them in an authentic and transparent way, and you are representing your community in your workforce. The team members delivering care, services and outreach must look like the communities they serve.”

Johnson-Agbakwu said she has her eye on the longterm goal of how to support UMass Chan’s health equity work through funding that sustains and supports and infrastructure that invests within communities, an approach that looks beyond the health system. The Collaborative in Health Equity will include a community investment fund to support local and global activities; one of the key activities will be a competitive grant program that funds projects for members of the collaborative.

By moving back to New England, JohnsonAgbakwu is coming full circle, returning home to address the needs of the community where she grew up. The difference now is that she returns as a leader in her field, a proven change maker and role model who can open locked doors. She hopes to inspire the next generation of young scholars to take the baton and advance the work even further. ■

UMass Chan Cares broadens volunteer opportunities in Worcester community

By Pat Sargent

On a Monday morning in late August, in the middle of an orientation for new employees at the Albert Sherman Center, Katherine Stickney introduced a core value of UMass Chan Medical School to two dozen new employees: advancing the health and wellness of our diverse communities. This value is the foundation of the UMass Chan Cares program.

“We want to expand what volunteerism looks like here at UMass Chan, especially with the caliber of employees that we have who are donating their time,” said Stickney, project manager for Community and Government Relations at UMass Chan Medical School.

The UMass Chan Cares program consists of two equally valuable components: time and money. Since its launch in 2018, both have been provided by UMass Chan employees by the thousands—in both dollars and hours— to support research, student financial aid and local organizations in need.

“It’s a way for people to get involved in their community, either financially or with their time or both,” said John Erwin, vice chancellor for government relations.

Since its inception, the campaign has raised nearly $1 million through contributions made by members of the UMass Chan community during a campaign that takes place every fall.

In addition to the annual giving campaign, UMass Chan employees have the option of volunteering their time through the UMass Chan Cares volunteer initiative and can use up to 16 hours of scheduled work time per year to support their favorite causes and institutions as volunteers.

Since the start of the volunteer initiative in 2022, more than 300 employees have recorded more than 2,400 volunteer hours.

For the 2023-2024 academic year, Erwin’s office set a goal to increase the number of volunteers hours by 30 percent.

“When I go to volunteer events, the enthusiasm that people have for doing

the work makes me proud. I don’t think I’ve ever been at a volunteer event where somebody says they’re not going to volunteer again,” Erwin said. “For members of departments that work remotely, volunteering offers an opportunity to build camaraderie among colleagues who may have never met each other in person.”

Left to right:PamelaAubrey,assistantdirectorofCOIand internationalrisk,OfficeofManagement;Katie Kornitsky, clinical research coverage analyst, Center forClinical and Translational Science; Michaela Nobrega, department administrator, Office of Management; and Lindsey Ford, research coordinator II for iSPARC, fill bags withfood for veterans at Project New Hope in Worcester.

FAITH NINIVAGGI

Expanding the volunteer initiative

In 2023, the Office of Community and Government Relations introduced a monthly volunteer initiative, rallying participants through the UMass Chan Cares campaign and organizing efforts to service multiple communities and needs.

“For members of departments that work remotely, volunteering offers an opportunity to build camaraderie among colleagues who may have never met each other in person.

John Erwin Vice Chancellor, Government Relations

“I think there are a lot of people who are craving that sort of connectivity—being able to provide their time while also providing a service to the Greater Worcester community. It’s been great to see so many nonprofit and educational partners taking advantage of these resources and getting things done that they wouldn’t have if not for our volunteers,” said Ché Anderson, assistant vice chancellor for city and community relations.

Since April, employees have volunteered through the monthly initiative at multiple sites in Worcester, including groundskeeping at Lake View elementary school and the EcoTarium; sorting donated clothing and food items at Pernet Family Health; and participating at the annual Stand Down event at Veterans Inc., an initiative providing food, clothing and other services for area veterans.

“We wanted to be very thoughtful about building a good foundation for the monthly volunteer initiatives so that opportunities are in different areas, not just one community need being met or one type of volunteer skill offered,” Stickney said. “We’re trying to expand the volunteer opportunities we offer and have these efforts use skills that our volunteers already have—whether it’s graphic design, social media, marketing or any skills that will extend what we can offer to local organizations that need our help.”

In September, three dozen UMass Chan students and staff volunteers dispersed across the city to help at six nonprofit organizations as part of the United Way of Central Massachusetts’ annual Day of Caring.

Hundreds of volunteers participate in the Day of Caring each year, assisting with projects that include landscaping, painting, donation sorting and more.

This year, the UMass Chan volunteers spent their morning packing food boxes for veterans at Project New Hope in Worcester; helping clean up the camp area and cabins after a busy summer at the YWCA of Central Massachusetts’ Camp Wind-in-the-Pines in Leicester; assisting at the Worcester Public Library; processing donations and handling merchandising at Habitat for Humanity’s ReStore; cleaning and organizing the food pantry at El Buen Samaritano; and painting walls at AIDS Project Worcester.

Stickney said the office has developed a “matchmaking” program to pair volunteers and departments with organizations in need based on availability of volunteers and the type of work they can provide. Individuals or departments identify the types of volunteer work they would like to do, and Stickney matches them with an organization that fits.

“We want to make it as easy as possible for volunteers to do the work,” Stickney said, adding that these group efforts are great for department team building.

While the monthly volunteer initiative and matchmaking programs can offer employees a range of options to consider, there is one recurring opportunity every month.

Volunteers from UMass Chan visit Veterans Inc., a veterans support services and outreach center in Worcester, to help in the food pantry or serve dinner to the many veterans in the area in need during the third week of every month.

Susan Dunshee, volunteer and activities coordinator at Veterans Inc. said, “If we didn’t have the UMass Chan staff members come in

Left to right: John Erwin, Katherine Stickney and Ché Anderson

once a month to volunteer, it would be a lot harder for us to provide as much as we can to our veterans. Our teams work well together.”

“The volunteers come in and meet some of the veterans and build relationships with them. That’s something that is priceless,” Dunshee added.

Supporting schools in Worcester’s North Quadrant

A cornerstone of the UMass Chan Cares campaign is the North Quadrant Support Services initiative that addresses socioeconomic barriers to academic success faced by many students in the city’s North Quadrant schools, which include North High School, Worcester Technical High School, Worcester East Middle, Belmont Street, and Roosevelt, Grafton Street, Rice Square, City View, Union Hill, Vernon Hill and Lake View elementary schools.

UMass Chan established the North Quadrant Support Services initiative in 2017 with grant funding from the Remillard Family Community Service Fund, which provides ongoing support for community outreach programs led by UMass Chan faculty, staff and students. The North Quadrant initiative has become the most widely chosen option by members of the UMass Chan community who contribute financially to the UMass Chan Cares campaign and is now entirely funded by these contributions.

A signature project of the North Quadrant initiative is an annual backpack drive hosted by the Office of Community and Government Relations. The drive provides hundreds of backpacks loaded with essential school supplies to three elementary schools in the North Quadrant. This year, 675 supply-laden backpacks were donated to students in grades 1 through 3 at Roosevelt, Rice Square and Belmont Street elementary schools.

“I think it’s good for the kids to see the community coming in and helping and seeing that our district has a nice partnership with UMass Chan,” said Maureen Power, principal at Roosevelt Elementary School. “One of our core values, and something that we’re trying to build on, is having more community involvement so the kids can see people giving back. It serves a lot of good.”

In addition to the backpack drive, charitable donations to North Quadrant initiative directly support classroom teachers in the form of grants

Front to back: Hannah Rinehardt, data analyst for Infectious Diseases and Immunology; Katherine Stickney, project manager for the Office of Community and Government Relations; and Colleen Locke, social media manager for the Office of Communications, paint the walls of a room at AIDS Project Worcester.

for projects that would not be possible without outside funding. This academic year, more than $34,000 was awarded to 28 teachers at nine schools in the North Quadrant, for projects that included accessibility improvements at the North High community garden and new lab equipment at Worcester Tech.

Food insecurity is among the barriers many families in the North Quadrant contend with. UMass Chan Cares is helping alleviate that burden by funding food pantries that are open to all students and families in the North Quadrant. In late 2022, the food pantry built by UMass Chan volunteers at North High was restocked just before Thanksgiving thanks to funds from employee contributions to the UMass Chan Cares program. And in February, through the volunteer initiative, UMass Chan students and staff volunteers helped clear out space at City View school for “The Eagle’s Nest,” a new food pantry accessible to the school’s 430 students.

“The success of the North Quadrant Support Services project exemplifies the spirit of collaboration that imbues the UMass Chan community,” said Chancellor Michael F. Collins. “Year after year, on this project and others, members of this institution show up and give of themselves because they truly care about the communities that surround us and are invested in their success.” ■

FAITH NINIVAGGI

Noa Greenwood, who is participating in an investigative gene therapy trial for Canavan disease, cuddles with her mother, Lori Greenwood. The therapy was developed at UMass Chan Medical School.

FAITH NINIVAGGI

‘They are the heroes’

Families of children with genetic disorders inspire gene therapy research; new translational institute streamlines ‘bench to bedside’

By Susan E.W. Spencer

Three-year-old Noa Greenwood, an inquisitive toddler with a cherubic smile, a taste for pizza and a flair for fashionable footwear, is living inspiration for the promise of gene therapy.

Diagnosed at 11 months with Canavan disease, a fatal genetic disorder that attacks the central nervous system, the Boston tot became one of the first to receive an investigational therapy developed at UMass Chan Medical School.

More than a year later, Noa’s parents say she’s interacting with family, feeding herself and walking with a walker.

“It’s dramatic changes, all the things that you’d say—and they’re all true. But this is not the child that was on the trajectory that she was on,” said Noa’s father, Lee Greenwood.

Adalynn Murray, age 1 ½, came to UMass Chan with her parents from Hannibal, Missouri, in February to participate in a gene therapy trial for Tay-Sachs disease, a rare genetic disorder that destroys nerve cells in the brain and spinal cord. Ten months after her treatment, Adalynn also shows promising signs.

“She has been getting stronger every day,” said her mother, Megan Murray. “She is able to eat much thicker foods; she’s grown with her skills; she says, ‘mama’ and ‘no’; she practices standing in physical therapy and she’s able to stand up on her own for a few seconds.”

Riaan DiGeorge, a 4-year-old New York City preschooler, is helping drive the push for UMass Chan researchers in the new Translational Institute for Molecular Therapeutics to develop a treatment for Cockayne syndrome, a neurodegenerative disease. His parents, Jo Kaur and Richard DiGeorge, founded the nonprofit Riaan Research Initiative, and entered into an agreement with UMass Chan in 2021 to support research into the fatal genetic disorder.

Since then, UMass Chan researchers have announced a proof-of-concept milestone showing the therapeutic effectiveness of an adeno-associated virus (AAV) vector for gene replacement in a mouse model of Cockayne

syndrome. An application to the Food and Drug Administration for investigational new drug (IND) status, which would allow clinical trials in humans to begin, is being prepared.

“We’re at a place we never thought we’d be,” said Kaur. “It feels like we’ve already climbed Mount Everest and then some, but we know we still have an incredibly long way to go.”

UMass Chan has become a powerhouse of gene therapy research over the past two decades. Collaboration among researchers, clinical faculty and brave patient families willing to be part of the journey is advancing medical science closer to a cure.

“The passion of some of our investigators here has really driven these efforts forward and allowed partnerships between those who are working on platform technology to deliver gene therapy and those who are working on the diseases themselves,” said Terence R. Flotte, MD, the Celia and Isaac Haidak Professor, executive deputy chancellor, provost, dean of the T.H. Chan School of Medicine and professor of pediatrics.

Especially for rare diseases, he said, “It’s almost always the families who are really pushing the envelope. Some are fundraising to support research for their condition and also helping to find the scientist experts and getting them together to address their condition.”

Pioneering research advances at UMass Chan

Dr. Flotte, an internationally known pioneer in gene therapy research, arrived at UMass Chan in 2007, more than a decade after serving as the principal investigator who led the team at Johns Hopkins in the first successful gene transfer with an AAV vector in animals and the first ever human trial of an AAV.

UMass Chan’s main focus then was on RNAbased therapeutics, coming shortly after the 2006 Nobel Prize in Medicine or Physiology was awarded to Craig C. Mello, PhD, the Blais University Chair in Molecular Medicine and distinguished professor of molecular medicine, for his co-discovery of RNA interference.

The science recognized by that Nobel Prize spurred, in the years that followed, the establishment of the Horae Gene Therapy Center and the RNA Therapeutics Institute, which have led to advances in gene therapy platforms and potential treatments for a host of rare diseases including Tay-Sachs, Canavan and amyotrophic lateral sclerosis.

New Yorkers Richard DiGeorge and Jo Kaur, pictured with their son Riaan DiGeorge, founded the nonprofit Riaan Research Initiative to support UMass Chan scientists’ quest to cure Cockayne syndrome.

Guangping Gao, PhD, the Penelope Booth Rockwell Professor in Biomedical Research, professor of microbiology & physiological systems, director of the Horae Gene Therapy Center and co-director of the Li Weibo Institute for Rare Disease Research, who was recruited to UMass Chan by Flotte, has been a driving force behind gene therapy for patients with rare diseases. He discovered the gene and mutations responsible for Canavan disease in 1993 and has spent his career pursuing a treatment.

“Everything is about patients and families. They are the heroes,” said Dr. Gao. “What we’re trying to do is to make some difference in their lives.”

Flotte said, “It’s a hopeful time, but also a time where we’re somewhat on the precipice, because the clock is ticking. The child may have a condition that continues to progress as we’re working on the research. That makes it all the more crucial that we accelerate translating knowledge about what the gene is into some form of therapy.”

UMass Chan’s Translational Institute for Molecular Therapeutics was launched in 2022 to address just this type of need. Families who have a child with a rare disease have few options because not much may be known about the genetic mutations associated with the disease; and because it is rare, funding opportunities for developing treatments are limited.

“The institute came about with the recognition that we have fantastic basic research, but then we don’t have an outlet for it, and investigators had to learn individually the pathway from the bench discovery to the clinic,” said Miguel SenaEsteves, PhD, associate professor of neurology and director of the Translational Institute. “We want to establish the necessary infrastructure to support the efficient transition from discovery to a first-in-human clinical trial.”

Lee, Max, Lori and Noa Greenwood share a warm moment in their Boston home.

FAITH NINIVAGGI

Inspired by patients

“It’s almost always the families who are really pushing the envelope. Some are fundraising to support research for their condition and also helping to find the scientist experts and getting them together to address their condition.”

TERENCE R. FLOTTE, MD

When Noa Greenwood was born in August 2020, during the height of the global COVID-19 pandemic, Canavan disease was not among her parents’ worries. In fact, they had never heard of it.

Still, the Greenwoods knew something was going on with Noa from nearly the beginning. She would cry inconsolably every waking moment.

“By about eight weeks, we were concerned that there was something wrong with her vision: She wouldn’t follow us or respond to us,” said her mother, Lori Greenwood. “That led to concerns about weight gain, missing milestones, acid reflux—it was just issue after issue. We really had a hard time connecting all the dots to figure out what’s going on.”

The Greenwoods were told Noa would get over it. It was colic. Or fussiness. Finally, at 11 months, they were able to see a neurologist in Boston and get an MRI.

“When we got that diagnosis, over Zoom, it was heartbreaking,” Lori Greenwood continued. “We’re Googling Canavan disease and it was like, oh my God, this connects all those dots.”

But instead of telling the Greenwoods, “Sorry, there’s nothing to be done,” Noa’s pediatric neurologist mentioned there was a clinical trial on the horizon that could make a difference.

The same day Noa was diagnosed with Canavan disease, the CANaspire Phase I-II open-label clinical trial sponsored by Aspa Therapeutics, a BridgeBio company, opened on the website ClinicalTrials.gov. The trial investigates the gene therapy developed by researchers at UMass Chan led by Gao and Dominic J. Gessler, MD, PhD’20, assistant professor of neurological surgery. Mass General Hospital neurologist Florian Eichler, MD, is principal investigator on the trial.

“We were, like, the first family to be given this idea that there was something you could do,” Lori Greenwood said. “There’s a trial, there’s a doctor, it’s all here. We were the first to be given that hope. And that’s such a powerful thing to have, a glimmer of hope.”

Noa received a dose of gene therapy BBP812 in June 2022, becoming the third child to participate in the CANaspire trial.

The Greenwoods connected with Gao in November 2022 when Gao was honored for his work by the National Tay-Sachs & Allied Diseases Association at its “Imagine & Believe” gathering in Boston. The family stayed in touch, and in April 2023 they brought Noa to the Medical School to meet the research team behind the gene therapy, as a special “thank you.”

After the visit from the Greenwoods, Gao said, “What Noa is doing is just what my grandchildren would do. Canavan research is part of my life, and to see gene therapy make a difference, it’s just so satisfying.”

FAITH NINIVAGGI

Now, life in the Greenwood household, which also includes Noa’s 7-year-old sister and best playmate, Max, and rescue dog, Gracie, is full of family energy. The girls play; they go to school or day care while their parents work. And their parents laugh, cry and high-five each other when Noa and Max squabble, something they never imagined Noa would be able to do.

Lee Greenwood said, “Whatever the long-term outcomes are, we have no idea, we understand that that’s what a trial is all about. She’s the guinea pig, but just to have this time to have this beautiful child. We can’t express how incredibly fortunate we feel. This is who you’re fighting for.”

Adalynn Murray, diagnosed with Tay-Sachs disease, is also progressing after receiving gene therapy in February as part of a clinical trial led by Flotte at UMass Chan and Dr. Eichler at Mass General.

Her mother recalled, “The day she was born, I noticed that her eyes would shake back and forth. I mentioned that to the doctor, and they told me to give it three months and it will go away.”

When the shaking got worse, Adalynn saw an ophthalmologist, who diagnosed her with nystagmus, a condition of involuntary eye movements.

“And that is when they found the red cherry spot in the back of her eye, which led to seeing a neurologist and led to her diagnosis,” said Megan Murray. “We caught it before most people do.”

The lab that notified Megan Murray of the test results told her that Adalynn had a life expectancy of two to three years. But the neurologist who had made the diagnosis knew about a clinical trial at UMass Chan.

When the call finally came several months later that Adalynn was eligible, Megan Murray and her then-fiancé, Hunter Murray, got their first real sense of hope. Their employers—she is a dental assistant and he works in construction— were “really great bosses who held our jobs” while the family traveled from the Midwest to Massachusetts for treatment, and while Megan Murray stayed home afterward with Adalynn, who is immunosuppressed.

Meeting Flotte for the first time was “very emotional” for the Murrays. “Dr. Flotte and the research team ended up being like family, almost. It was such a comfort to be there,” Megan Murray said.

While in Massachusetts, Adalynn had neurosurgery for gene therapy and then had appointments almost daily, bouncing back and forth between Worcester and Boston for tests, consultations and rehabilitation therapy.

Megan Murray’s life now is hopeful and busy. She’s learned to become an advocate for her child, and when her local health care providers have questions about Adalynn’s care, “Dr. Flotte is quick to say, ‘Tell them to give me a call,’” she said.

She believes families such as hers play an important role in advancing gene therapy.

“I think the future is dependent on the families that are willing to do clinical trials because every kid is different,” she said. “Adalynn was the only kid that hadn’t had symptoms yet, so that was new for them. I just think it feels good to be able to help out and potentially save another kid.”

Adalynn Murray, (with her parents Megan and Hunter), was diagnosed with Tay-Sachs at an early stage. She is participating in a gene therapy trial led by Terence Flotte at UMass Chan and Florian Eichler at Mass General.

“We have to know that we tried, and we have to keep trying,” said Jo Kaur, whose son, Riaan, has an ultrarare genetic condition, Cockayne syndrome. “That’s what we will do until hopefully we can get a treatment for this disease.”

The journey to find a treatment for Riaan began shortly after he was diagnosed, at around 15 months. Kaur, a civil rights attorney, and DiGeorge, a special education teacher, were blindsided by the news and didn’t know where to turn. So, they posted Riaan’s story on Twitter (now X).

“A number of people reached out and said, there are things that you can do,” said Kaur. “And that’s when we became connected with the rare disease warrior community.”

Through those initial contacts, Kaur and DiGeorge heard from a specialist at Harvard and a researcher at the National Institutes of Health, who put them in touch with Flotte.

Kaur said, “I emailed Dr. Flotte and literally a week later we had a Zoom and sorted it out from there.”

Kaur and DiGeorge founded a nonprofit foundation to raise money to support research on Cockayne syndrome, a funding avenue that Flotte said is a major resource for many rare diseases that don’t attract biopharma investment or grants because of the risks and small potential market.

“The part of this diagnosis that’s so challenging is the unknowns,” said Kaur. “There are so few with the disease in the world. It’s like being lost at sea, you’re really on an island by yourself and having to learn more about it and connect with scientists and researchers that want to tackle it and treat it. That’s how we cope. And it’s also how we keep going despite having this impossible diagnosis.”

Flotte brought in Dr. Sena-Esteves and fellow researcher Ana Rita Batista, PhD, instructor in neurology, to lead the research into a Cockayne syndrome gene replacement therapy. Their work through the Translational Institute for Molecular Therapeutics reached the important proof-ofconcept milestone testing an AAV vector in mice and the team is working toward submitting the IND application to the FDA to proceed with human trials.

In a little more than two years, the Riaan Research Initiative has raised almost $2.9 million, a process Kaur called, “a journey of miracles.” Riaan, a bright, energetic child who loves playing soccer using his gait trainer and listening to Sesame Street songs, provides a personal face to the scientists as they advance their work. But it’s a race against the clock to stave off declines.

Riaan’s family has monthly calls with the research team and participates actively as partners. Kaur said being involved every step of the way offers benefits besides commitment and fundraising.

“We don’t have the barriers that scientists might face in terms of collaborating with one another because they work at different institutions,” she said. “We’re sort of like free agents. We just email or phone other scientists in different countries and connect to people.”

Kaur pointed to a connection the family made with researchers in Switzerland, who had embryos of the mice that were needed and were able to get those embryos to UMass Chan, which helped expand and build their colony.

“It’s incredible because we had no idea what to expect when we first got the diagnosis,” said DiGeorge. “And now there is that array of people that want to help and you know, we are going to get this done.”

Dr. Batista, who leads the Cockayne syndrome research, came to UMass Chan from Portugal in 2014 with a background in neurobiology and a research interest in studying a rare protein disorder. She wasn’t familiar with Cockayne syndrome until Flotte and Sena-Esteves contacted her about the project. Working with families has been invaluable to her.

“There are things about disease characteristics that we learn from families. It’s huge, it’s a resource that you can’t have anywhere else,” she said.

Batista and her team, like other gene therapy scientists at UMass Chan, never stop to question why they relentlessly pursue this path.

“There’s a kid on the other end and so I don’t care about the disease, if it’s brain, muscle or bones,” said Batista. “There’s a kid on the other end who needs help.” ■

“There’s

a kid on the other end and so I don’t care about the disease, if it’s brain, muscle or bones. There’s a kid on the other end who needs help.”

ANA RITA BATISTA, PHD

FAITH NINIVAGGI

Alumni scholarships connect, support and nurture

By Mark L. Shelton

Gratitude. It’s a powerful emotion that has the potential to do enormous good, particularly when channeled in a deliberate, meaningful way. For alumni of UMass Chan Medical School, funding new scholarships is a tangible way to give back to their alma mater, which many credit for their successful careers in health care and research, and to express thanks for the philanthropic support that made their own education possible. This growing tradition now plays a significant role in financial aid at the Medical School, while nurturing connections between grateful graduates and bright-eyed students who are at the beginning of a similar journey.

Although tuition at UMass Chan remains comparatively low, the rising cost of tuition, fees and living expenses associated with higher education makes scholarships more important than ever. At UMass Chan, the pace of new scholarship support has accelerated accordingly; in fiscal year 2023, an all-time high of 21 new scholarships was established. Alumni play a critical role, with more than half of the 150 named scholarship funds at UMass Chan created by or in honor of alums, with another 13 created by parents of alumni or current students. Currently, endowment scholarship and student award funds are valued at nearly $10 million.

Stephen Gorfine, MD’78, is one alum with a drive to pay it forward. Dr. Gorfine and his wife, Laurie Gorfine, established a scholarship in 2013 to honor his father, Morris Gorfine, MD, a family physician in Cambridge. Gorfine said simply that he “felt a great debt to the Medical School” for the education he received and wanted to help academically strong students. The current recipient, Emma Dudley of the T.H. Chan School of Medicine Class of 2024, plans to work with urban, underserved populations, especially women and children.

Students, in return, are grateful for scholarship support. “This scholarship helps me in that it limits the financial burden of pursuing a medical degree. As a student from a low-income family, this creates a tangible impact on my access to education,” said Dudley.

“This will help me reach my career aspirations of becoming a physician, as well as an advocate for policy changes in health care rooted at the community level. This scholarship has truly brought me joy during a tough time, and I want to genuinely thank you,” said Nicholas Scuderi, T.H. Chan School of Medicine Class of 2025 and recipient of the Class of 1981 Reunion Scholarship.

For many donors, the relationships they build with recipients of their scholarship is a deeply fulfilling part of the experience. “A big part of the reward is getting to know the student and seeing them progress through medical school.

Above: Medical student and scholarship recipient

Stephanie Choi with Nathaniel Clark, MD’88.

The personal connection is very important to me,” said scholarship donor Nathaniel G. Clark, MD’88. An annual scholarship celebration attended by donors and scholarship recipients at UMass Chan is always a highly anticipated event, where the poignancy of bridging the past and present is palpable.

Thirty-four group scholarships have been created by classes celebrating reunion. This area of recent emphasis builds class unity while boosting support for financial aid. Reunion also inspires alumni to establish individual scholarships, including Patricia K. Spencer, MD’77, who stepped up for her 45th reunion.

“Reflecting on my 45th reunion,” said Dr. Spencer, “I’m thankful for the excellent education I received at UMass Chan, which prepared me for a rewarding career in medicine. I think it’s important that every student who wants to become a physician has that chance, regardless of their background or financial situation.”

As the Tan Chingfen Graduate School of Nursing has grown, so too have opportunities for creating scholarships. Of its current endowed scholarships and awards, one is named in honor of an alum, the Carol Bova, PhD, RN, ANP, Scholarship. Dr. Bova earned a Master of Science at UMass Chan and later received her PhD; she went on to have an illustrious career at UMass Chan as a professor of nursing and medicine and director of the PhD Program in Nursing; and for the past nine years has served as chair of the Institutional Review Board. The donors who established the Bova Scholarship were Lillian R. Goodman, dean emerita of the nursing school and longtime nursing professor Mary K. Alexander.

At the Morningside Graduate School of Biomedical Sciences, students are supported via an institutional scholarship and stipend system, common to doctoral programs in the sciences across the country, where graduate students play a key role in grant-funded research as part of their apprenticeship as scholars and scientists. UMass Chan alum Diane M. (Casey) Riccio, PhD’03, and her husband, Daniel J. Riccio Jr., endowed a travel fund for graduate students that will support travel to conferences where students can present their own work and learn from others, an invaluable experience that might not otherwise be possible.

Donors often choose to honor a loved one through their scholarship. David McManus, MD’02, MSc’12, the Richard M. Haidack Professor of Medicine and chair and professor of medicine at UMass Chan, and Diana K. McManus, MD’02,

first met sitting next to each other on medical school interview day in Worcester in 1998. More than two decades later, the married couple celebrated their 20th reunion year by endowing a scholarship named for David McManus’s mother, Joanne, a Boston Public School teacher who established a relationship with a school in Tanzania so lasting that they named the school for her.

“Joanne supported our education and the idea that everyone should have access to higher learning,” Dr. Diana McManus said. “We felt this scholarship was a very fitting way to honor her.”

At the same time, the scholarship is a lasting expression of their gratitude to UMass Chan. “Our time in medical school was a highlight in my life,” she said. “It was so inspiring. We were exposed to clinical medicine early on. At the time, it was a new way of teaching medical students. We participated in clinical care starting in our first year. My time with the Department of Pediatrics shaped my career.”

As UMass Chan continues to prepare students to lead in increasingly complex health care systems, alumni support of scholarships is a top priority of Advancing Together: The Campaign for UMass Chan. This comprehensive campaign will attract philanthropic investments across the Medical School that will define the next 50 years of learning and discovery. ■

Alumni interested in establishing an endowed scholarship, which requires a minimum investment of $25,000 over five years, can contact Prescott Stewart, executive director of advancement, at 508-856-2745 or prescott.stewart@umassmed.edu for more information.

Left: Nursing student Caitlyn Healy is a beneficiary of the Carol Bova, PhD, RN, ANP, Scholarship.

Right: David McManus, MD’02, MSc’12, and Diana K. McManus, MD’02, who met more than 20 years ago during their med school interviews.

JOHN GILLOOLY/PEI

Michael F. Collins, MD Chancellor and Senior Vice President for the Health Sciences

Isometimes wish, perhaps like many of you, that I had learned to play a musical instrument. Or, if you did play as a child, maybe you wish you had stuck with it. The piano would have been my choice. Observing those with musical ability, we recognize that the crescendo of an orchestra, under the direction of a maestro conductor, can bring a symphony to life and transport an audience to another world.

In our universe, as the principal investigator convenes the lab team to structure an experiment or a surgeon guides the operating room team, each, in their own right, acts as a conductor, leading many who possess individual talents, that when combined, ensure that the hum of the laboratory or procedure room moves in unison, with orchestral magnificence, all to benefit those for whom it is our privilege to help and care.

Such feats, be they in the lab or clinical setting, are not achieved solely by one exceptional individual. Truly, it takes the talents of a team, working collaboratively, to advance a higher purpose.

As we settle into the rhythms of an invigorating academic year, we are focused on the transformative power of collaboration, which at UMass Chan is not a marriage of convenience, but, rather, a value proposition and intentional commitment to a greater good.

In September, we unveiled a new campaign— Advancing Together—that captures beautifully not only the special spirit that has always defined the Medical School, but what we offer to our learners, faculty, staff, advocates, partners and communities.

It’s not just what we do here: training the next generation of physicians, nurses and scientists; leading groundbreaking research and conducting clinical trials; and working to make our communities healthier. It’s how we do it. With a unique, deep and abiding commitment to collaboration that drives innovation, discovery and excellence. More and more, faculty and learners who could advance their careers anywhere are choosing to come here, where they can partner, grow, discover and, yes, even dream, together with some of the brightest minds in academic medicine.

The concept of “advancing together” is particularly relevant at this moment, as academic medicine faces increasingly complex and interconnected challenges such as the integration of technology, emerging diseases, the continued strain on financial resources to provide care for all who need it and the evolving needs of diverse patient populations. These challenges necessitate a collaborative approach that transcends individual disciplines and ensures that each member of our community contributes their unique expertise.

It’s not just what we do here. It’s how we do it.

In this way, our physicians, scientists, nurses, students and employees—each with their own role and unique influence—forge a symphony of minds just as solo musicians do when they come together to create the symphonic harmony of a full orchestra. We are fortunate to bring this unity of purpose to the musical composition that is UMass Chan.

Here, we are all in for Massachusetts, perennially recognized as one of the best in the nation for primary care education and proud to be a top place to work where uncommon collaborations drive new knowledge, inspire caregivers who put others first and offer hope to more people than we could ever know.

Many great minds. One UMass Chan. Advancing together ■

@umasschan

@umasschan is the magazine of UMass Chan Medical School, one of five campuses of the UMass system. The magazine is distributed periodically to members, benefactors and friends of the UMass Chan community. It is produced and published by the Office of Communications.

Readers are invited to comment on the contents of the magazine, via email to UMassChanCommunications@umassmed.edu; please include “@umasschan magazine” in the subject line.

Chancellor and Senior Vice President for the Health Sciences: Michael F. Collins, MD

Executive Deputy Chancellor and Provost, Dean of the T.H. Chan School of Medicine: Terence R. Flotte, MD

Vice Chancellor for Communications: Jennifer Berryman

Editor: Ellie Castano

Design: Dan Lambert

Photography: UMass Chan Office of Communications except as noted

55 Lake Avenue North Worcester, MA 01655-0002

Chancellor Michael F. Collins announced the beginning of the public phase of Advancing Together: The Campaign for UMass Chan Medical School, a fundraising initiative with a goal of raising $500 million by late June 2026. The campaign, which started in 2019, raised $350 million in the silent phase.

Learn more: umassmed.edu/campaign

Readers, because our mailing lists are supplied by several departments, some of you may receive more than one copy of this magazine. Thank you for passing extras along to others who are interested in UMass Chan Medical School.