Wilmot Cancer Institute Dialogue 2023, Vol. 2

Wilmot Cancer Institute University of Rochester Medical Center

2023 Volume 2

New Chief of Pediatric Oncology Loves a Good Challenge

Letter from the Director Hello Friends of the Wilmot Cancer Institute, As I write these remarks, it’s a beautiful fall afternoon and I’m looking outside my window in the Wilmot building at the Golisano Children’s Hospital. One of the advantages of working here is the ability to integrate knowledge from across the Medical Center and the broader University of Rochester. This differentiates our “matrix” cancer center from freestanding cancer centers, where collaborating can be challenging. In fact, during more than two decades at Wilmot, I’ve witnessed exciting clinical and laboratory collaborations between pediatric and adult specialists. In lymphoma (my area of expertise), for example, a recent clinical trial enrolled patients ages 12 and above at both Wilmot and Golisano — and the results of the study broke new ground nationally.

These collaborations are critical to discovering and applying new treatments for a particularly vulnerable age group: adolescents and young adults with cancer. Despite progress, additional research is urgently needed for these patients, whose lives are threatened at the cusp of their independence. I know this first-hand: I am currently treating a 19-year-old for Hodgkin lymphoma, and the case has touched me deeply.

Jonathan W. Friedberg, M.D., M.M.Sc. Director, Wilmot Cancer Institute

With that background, and my personal passion for this issue, I’m thrilled to welcome Dr. Jamie Flerlage to Rochester as Chief of Hematology/Oncology in the Department of Pediatrics, and Assistant Director of Clinical Research at Wilmot. She came to us from St. Jude Children’s Research Hospital. On the next pages, you can read about Dr. Flerlage’s bold vision, and her impressive expertise and ability to build collaborative networks, while also learning more about our premier pediatric and young adult cancer team.

As a final note, I’m still basking in the glow of our inaugural Wilmot Warrior Weekend. To see more than 1,500 individuals walk, run, or ride with a shared goal of “leaving cancer in the dust,” was humbling and inspiring. I assure you, this motivates our faculty and staff to work extra hard, and all money raised will stay in Rochester, to be invested in seed grants and our Judy DiMarzo Cancer Survivorship program.

My best to everyone for the upcoming holiday season. In keeping with Thanksgiving, I’m grateful for your steadfast support.

Jonathan W. Friedberg, M.D., M.M.Sc. Director, Wilmot Cancer Institute

In this issue Harmonizing Pediatric, Young Adult Cancer Care...........................................................................2

2023 Volume 2 Editor / Writer Leslie Orr Leslie_Orr@urmc. rochester.edu Contributors Kellie Fraver, Ruth Harper-Rhode, Barbara Balcaen, Tyler Bowers, and Jillian Lynch Graphic Design Beth Carr

Cancer Struck, Shaping a Young Scientist’s Career.......................................................................6 The Inspirational Story of 24-year-old Sarah Moore.......................................................................8 News Briefs and Nursing Notes...........................................................................................................10 Advancement News ................................................................................................................................. 12 How To Quit Smoking...............................................................................................................................13 Warrior Weekend.......................................................................................................................................16

Feature Photography Jeff Witherow, Matt Wittmeyer The Wilmot Cancer Institute is a component of Strong Memorial Hospital.

On the Cover Jamie Flerlage, M.D., chief of Pediatric Hematology/Oncology, and assistant director of Clinical Research at Wilmot

About Wilmot Cancer Institute

UR Medicine's Wilmot Cancer Institute is the largest cancer-care provider in the state outside of New York City. Its goal is to prevent and conquer cancer through innovation in science, patient care, education, and community outreach.

Based in Rochester, N.Y., as part of the University of Rochester Medical Center system, Wilmot serves approximately 3 million people in a 27-county region in western and central New York. Wilmot features an 87-bed flagship cancer hospital, 14 outpatient locations, and one of the state’s largest Blood & Marrow Transplant (BMT) programs. Wilmot is a component of Strong Memorial Hospital and home to the area’s first cancer survivorship clinic, one of the nation’s first specialized geriatric oncology clinics, and an integrative oncology center free to all patients.

Established in 1974, Wilmot has a long history of outstanding clinical and research breakthroughs — including pivotal contributions to the

3M people 27 counties 14 locations

pioneering HPV cancer vaccine, and the study of cancer-related nausea and the role of anti-nausea drugs.

Treats over

38,000 patients

Employs over

330

annually

$40M

oncology nurses

Employs over

160

in cancer research funding each year

oncology doctors

Offers nearly

200

clinical trials

Employs nearly Trains over

300

100

researchers

future oncologists

Wilmot is proud to be part of the NCI National Clinical Trials Network, and to serve as a hub for the NCI Community Oncology Research Program.

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Face to Face: Meet “Upstate Girl” Jamie Flerlage, MD, who Brings World-Class Expertise and Leadership to Cancer Programs for Children and Young Adults In July, Jamie Flerlage ran the Mount Hood ultramarathon in Oregon. She conquered a 31-mile rocky path, with a 5,600-foot elevation gain, along the scenic Pacific Crest Trail.

Why did she do it? “I love new challenges,” says the pediatric oncologist.

Her latest challenge: Building a better path between Wilmot Cancer Institute and Golisano Children’s Hospital at the University of Rochester Medical Center.

Historically, cancer care for adolescents and young adults has been provided by physicians who work in their own niches. At the UR, this takes place in two separate buildings that stand next to each other: Patients are treated at either Golisano or Wilmot depending upon how they are referred into the health system, what door they happened to walk in, their own preferences, or physician expertise.

The same is true in most places, Flerlage says.

Her task is to facilitate collaboration — and to bring a national perspective on new treatment trends that lean toward integrating therapies for people of all ages, particularly vulnerable adolescents and young adults. This group can get lost between a focus on younger children and middle-aged or older people, where cancer is more common.

Wilmot and Golisano leaders worked together to recruit Flerlage, M.D., M.S., as the new Chief and Academic Director of Pediatric Hematology/Oncology at Golisano, and Assistant Director of Clinical Research at Wilmot.

The children’s hospital has a storied and rich history, with important contributions to childhood cancer care, featuring renowned physicians such as Barbara Asselin, M.D., David Korones, M.D., and Craig Mullen, M.D. But, as Korones says, “it’s very healthy to have a fresh perspective.”

Korones has been practicing at Golisano for 35 years, and he evaluated Flerlage (pronounced Fler-la-gee) during her interviews. “She’s smart, a dynamo, and a human with lots of charisma,” he says.

Few would argue with the “dynamo” description. While advancing her career at the extraordinary St. Jude Children’s Research Hospital in Memphis, Tenn., and leading a national group of lymphoma researchers through groundbreaking clinical trials, she and her husband were also raising two young children and tackling various athletic feats.

Flerlage has been playing ice hockey since age 3, for example, and already has signed up for an adult league in Rochester that skates at night, after her daughters have gone to bed.

Late this summer, Flerlage and husband, Tim, a pediatric infectious disease and critical care physician-scientist, who is also working at URMC, packed up their busy life in the South and landed in Rochester. A native of smalltown Vestal, N.Y., near Binghamton, Flerlage is excited to begin the next chapter closer to her family — in a place where she believes she can learn and prosper.

On the following pages is an edited transcript of a conversation with her.

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Welcome to Rochester! Tell us about yourself and how you became interested in medicine.

I’m an upstate girl. It’s where I call home. My mom and dad are both from Buffalo, and so we have all of our roots here. I really love the New York area.

In high school in Vestal, I was very fortunate to be part of a program called New Visions. It’s a New York state program like no other. For most people, your senior year is sort of a wash, but this program is for career internships and they take it to a whole new level. They offer programs in education, law, communications, business, and healthcare. I was part of the healthcare program.

No one in my family is a physician, and I wasn’t 100% sure what it would look like. But my senior year I spent half a day, every day, in Lourdes Hospital (Binghamton, N.Y.), being able to observe everything from birthing babies to autopsies. These are things I didn’t do again until fourth year of medical school. It was full immersion and exposure: Let’s show you what it’s really like, behind-the-scenes, including sterile processing. I loved every day.

I loved all aspects of it.

You were star-struck?

Yes! And, as I think back, I got to see some pediatric cancer patients from Binghamton during that time. I also had a little bit of personal experience, losing a grandfather to lung cancer. We have a very large family and his oncologist from the start cared not just for my grandfather but, literally, for the whole family. I always wanted to emulate that deep relationship and connection we had with his oncologist from the moment of diagnosis.

My experience with New Visions was the first time I thought about medicine and cancer as something to focus on.

Actually, until that time, I wanted to be an astronaut! I would still love to go to space. So, if somebody said to me tomorrow that’s possible, we might have trouble here. (laughs) Dan Bursch (another Vestal, N.Y., native and NASA astronaut, who traveled four times to space) came to my high school once and said, “You know, very few astronauts really go to space. Medicine is another aspect of science and a way to learn and grow.” So, it was an interesting intertwine.

I went to Union College (Schenectady, N.Y.). It has an eight-year leadership and medicine program, where you apply to med school and go to college at the same time. It was a perfect merge, allowing me to play hockey all four years while learning leadership in medicine. I loved the focus on leadership. I think from my sports experiences, I learned to really value effective leadership. I can see how much it drives a team and how much further you can go.

I also think people perform their best when they know their role and there’s clear expectations. In medicine, I like to understand people on a deeper level, what’s happening in their life. It helps me to meet them where they’re at… You don’t have to be best friends, but you do have to be really great colleagues.

I attended Albany Medical College. When we went to Capitol Hill to lobby for the AMA (American Medical Association), it occurred to me that the people sitting in those seats are making decisions about our health care every day. If you don’t speak up, no one’s going to listen. It taught me that as needs arise, I will be the first to show up and use my voice for our patients and families.

Another fun thing I’ve learned in life is that there are leaders everywhere, in all shapes and sizes. And not just in academics.

They are in our community, and they can teach us things. Going out externally to learn leadership styles always brings a different flavor and fresh eyes.

What are your first impressions of the University of Rochester and Wilmot?

The expectation here is that people will continue to grow, and that the institution invests in them. I say that with excitement.

The expectations of leaders here are not stagnant. It’s a lifelong journey. Certainly, I have an immense amount of learning and growth to do in this role.

There’s also a sense of community. Among the division chiefs, they all meet and support each other.

A couple of things: authenticity and integrity. And someone that everybody trusts. I say that with a lot of importance.

Getting to work with Dr. Friedberg (Wilmot Director Jonathan Friedberg) is one of the things I look forward to the most. His vision for the cancer center very much made me want to start looking here. His idea — that the Wilmot team is aligned with what patients in upstate New York need — offers a lot of opportunities.

A team functions well when everybody is able to feel valued, and play at their best. I’ve also learned how to manage peers. We’re all a team. We’re all the same, there’s no hierarchy. In college hockey, I had the honor of being a co-captain all four years and it really taught me how to lead from within. I will always be willing to do anything that I’ve ever asked someone else to do.

I had been at St. Jude for 11 years, and I am incredibly grateful to have been blessed with an amazing team there. Taking all of the things I learned and bringing them back home to upstate New York is very meaningful, at a university that I’ve found to be very inspiring. It’s a place that believes in the “better together” premise.

What do you think are good leadership characteristics?

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Cohesiveness is what drives somebody to be their best…and being part of a team and watching when that happens — and when it doesn’t happen — is very striking.

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testing of drugs that are making many cancers curable. In pediatric cancer, very rarely do trials create a risk that is worse than a patient’s current options. Usually, clinical trials offer the chance to have less-toxic therapy, or to cure the cancer with lessaggressive amounts of treatment. So, it’s a premise of ‘curing better.’

I look forward to figuring out how we can continue to increase access for trials that make sense for our patient population — and hopefully bring in newer therapies throughout the area.

Because we’re a regional center, we want to be able to harmonize with the other medical centers in upstate New York. We want to harmonize and strategize with them. I look forward to learning that landscape over the next year.

What are your plans for the pediatric oncology division?

One is, I really hope to expand the division and to recruit team faculty. The current team is incredibly strong… so, there’s no rush.

We need to bring in the right people that are the right fit, to keep the team balanced.

Another goal is to increase our ability to run clinical trials in pediatrics. We will probably need some additional support, and the cancer center is well aware of this.

As we grow, certain aspects of the job will be more exciting to certain people… so, really figuring out what role each person would like to play, and where they’d like to be in three to five years. What are their big dreams and how do we make sure that happens? I look forward to doing that.

You came to Rochester from one of the world’s best pediatric cancer hospitals. Where do things stand in the treatment of childhood cancer?

Many childhood blood cancers have cure rates of 90% or above.

We still have work to do with solid tumors, particularly in neurooncology (brain cancer), and certain acute leukemias.

We’re learning so many things from the genetics of tumors.

We’re learning why some patients don’t do as well on standard therapies because they have certain gene mutations, and those genes are able to escape some of the therapy. People have discovered new drugs to overcome some of those “whys” and target those mutations.

This new era… is truly an era of precision medicine that’s started to make a difference.

One of the concepts I’ve talked about is “visioning,” where everyone has a clear vision of where you’re going. You actually script the goals. Let’s say we’re sitting here on this day and we have a shared goal of bringing in new recruits by September of 2025. In the two years of work in between, you actually script out what that looks like. It brings out value sets.

The things we know now in medicine will not be true at the end of my career, and I love the promise of a better tomorrow. That promise, even in the hardest times, leaves me incredibly hopeful and motivated to continue to do research and to do better.

Another thing I’ve heard here is that people have a life outside of work that matters.

It’s a common question when I tell people what I do. Although it’s often the worst day of a family’s life to hear their kid has cancer, it is an honor of a lifetime to be there for that family and that patient.

I feel very strongly about work-life balance. We all learned during COVID what tips our balance. Physically and mentally, we need to allow people to fill their cups and come back to work to treat patients that are all-consuming of your heart, soul, and mind. We have to have a strategy for that, as a team.

My excitement is that we’re going to be able to grow the program, and make sure that everyone in the group feels invested and has a shared vision as that happens.

At Wilmot, you will have a leadership role in the Clinical Trials Office. Tell us your thoughts on clinical trials.

Treating cancer patients — better tomorrow than we did today — is what literally drives my soul.

I run the Pediatric Hodgkin Consortium in the U.S. with Stanford University, Dana-Farber Cancer Institute (Boston) and St. Jude, so I have a lot of clinical trial experience. I also synergize with the Children’s Oncology Group (COG).

Clinical trials allow patients access to new drugs, and the rigorous

Why is pediatric oncology rewarding to you?

I mentioned that I had the gift of having someone do that for us (with grandfather’s illness), and that has always been motivating. It is my pay-it-forward gift to do it for others.

Kids make me tick. They are so resilient — the things they go through and bounce back stronger. I am inspired and learn from them every single day.

I also love teenagers! I adore them. It’s a really interesting time in life; they are becoming their own people. I can remember being 18 and probably struggling to decide what to wear in the morning.

And yet they’re sitting in front of us and we’re asking them to choose between cancer therapies.

Everything is hard when you’re a teenager and young adult. It’s so important to bond with them, to meet them where they’re at — which is sometimes not where we think they should be. But meet them where they’re at.

It’s very challenging, but it’s an honor to be part of that phase of their lives.

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RESEARCH ROUNDUP

Research “Wunderkind” Finds Meaning in Cancer Diagnosis

Lauren Ghazal, Ph.D., F.N.P.-B.C., grew up in a Middle Eastern family that defied cultural expectations: Her father stayed home with the children — a “Mr. Mom of the 1990s,” she jokes — and her mother, a nurse, was the primary breadwinner.

In college, she studied economics, went to nursing school and became an advanced practitioner and researcher of the global nurse workforce, and then enrolled in a Ph.D. program.

Cancer unexpectedly knocked her off the ambitious course — but it also helped Ghazal figure out the “why” in her career.

“While in my Ph.D. program, I was working per diem as a nurse practitioner at an urgent care in New York City. I had a student shadowing me to learn about the lymph-node system and I was showing her how to do an exam,” Ghazal recalls. “I distinctly remember tracking my hand up to my collarbone and feeling a little lump. It was like everything you’re taught in NP school about health assessments: It was non-tender, one-sided, fixed — all things that are concerning.”

Ghazal was just 26, studying at New York University. She didn’t panic, but she did visit the NYU student health center right away.

Physicians can be dismissive of cancer symptoms in otherwise healthy young adults, Ghazal says, and patients end up getting diagnosed in later stages of the disease. Thankfully, that didn’t happen here, and she was told she had highly treatable, earlystage Hodgkin lymphoma.

It was still shocking. “I was in a Whole Foods store,” she says. “I got the call while shopping and it was so guttural. I remember carrying my grocery basket out of the store and into Central Park, and then just dropping everything on the ground… I just

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needed to call my Mom.” She feels fortunate to have been treated at Memorial Sloan Kettering (MSK) in Manhattan. Notably — that was the beginning of a connection to Wilmot Cancer Institute, where Jonathan Friedberg, M.D. M.M.Sc., is the director and a worldwide lymphoma expert.

“I had an incredible oncologist at MSK who actually used a lot of Dr. Friedberg’s research in my treatment plan,” Ghazal says.

Applying a Patient’s Viewpoint to Research While undergoing cancer therapy, Ghazal couldn’t work clinically because her immune system was compromised. She lost income. She lost the feeling of invincibility. Her friends were moving on.

She began asking herself: What do I want to make of something this big?

During late-night Google searches, she stumbled into the psychosocial impact of cancer on young-adult survivors. She read about financial stress coupled with health stress, and given her background in economics — “a bulb went off,” she says.

Scientific literature was just emerging on cancer-related financial challenges for young adults. Questions that intrigued her: How does cancer affect a survivor’s work trajectory, before and after diagnosis, and work-related goals. What’s important to a young adult cancer survivor as it relates to work?

With the help of a supportive doctoral advisor and program director, and driven by a self-described type-A personality,

Ghazal powered through cancer treatments and completed the Ph.D. program in just four years.

For her dissertation, she interviewed 40 young adult cancer survivors and felt a kinship. Many of them told her they had been working in busy jobs before cancer, but wanted something with more meaning now, “something that gives back.”

Centered Outcomes Research Institute (PCORI) engagement award for a project to build a research base to support this group.

“As researchers and providers, we aren’t doing a great job of engaging with underrepresented communities,” she says.

At Wilmot, Ghazal will work with AnnaLynn Williams, Ph.D., Fast forward a few years, and Rochester snuck up on Ghazal assistant professor of Surgery and a fellow young-adult cancer again. While attending an oncology survivor, who studies accelerated aging nursing event in Washington, D.C., she among young people who had cancer; and struck up a conversation with Meghan Charles Kamen, Ph.D., M.P.H., associate Underhill-Blazey, Ph.D., a University of professor of Surgery, who focuses on factors The National Cancer Institute Rochester School of Nursing junior faculty that lead to health disparities in the sexual defines adolescent and young adult member, and came away impressed by the and gender minority population. Both (AYA) cancer survivors as people possibilities upstate. are also members of the CPC research ages 15 to 39 at the time of diagnosis. program at Wilmot.

In a joint venture, Wilmot and the School The challenge: Individuals in this age range of Nursing subsequently recruited Ghazal, Recently, Ghazal received a new accolade — experience very different social concerns and she moved to Rochester this summer. one that seems particularly fitting given the while facing cancer — from teens who are She is an associate member of Wilmot’s obstacles she’s overcome. trying to finish high school and become Cancer Prevention and Control (CPC) independent, to 20-somethings setting She was chosen as a STAT Wunderkind, a research program, and an assistant career goals and building relationships, “next-generation scientific superstar,” in a professor at the nursing school. to 30-somethings often coping with more national contest that singles out young, high established jobs, families, and financial “Rochester is like this hidden gem that achievers from top research institutions. commitments. Treatment plans also differ is being discovered more and more and STAT is a respected news agency that within this group, depending on age and really growing in nursing research and in exclusively covers health and medicine. cancer type. the young-adult cancer space,” Ghazal “I’m honored and proud to be recognized says. “It’s such an awesome place to be for my work and dedication to advancing right now.” adolescent and young-adult cancer care Her research has taken a slight turn to delivery — especially at a time when I am focus on young individuals from underrepresented backgrounds launching a new career in a new place,” Ghazal says. “I feel who have cancer, particularly people in sexual and gender blessed to contribute to nursing science as a patient, provider, minority groups, which includes people who are gay, bisexual, and researcher, and hope to continue this important work in a and transgender. She is a co-principal investigator on a Patientlong career.”

Solving Mysteries of Blood Production and Childhood Leukemia Healthy humans produce over two million red blood cells per second to supply crucial bodily functions.

Jim Palis, M.D., a hematologist, and Laurie Steiner, M.D., a neonatologist, have built strong research portfolios on the study of red blood cells with an eye toward what goes awry in the early stages of life. Recently, they’ve teamed up on a project related to childhood leukemia. Both are members of Wilmot’s Cancer Microenvironment research program.

They are investigating why infants with Down syndrome, a genetic disorder, are at an increased risk of developing leukemia by age two. The higher risk for cancer in these children begins with an abnormal production of blood cells as early as the second trimester.

At birth, routine blood testing can pick up the abnormality. In most Down syndrome infants, the altered blood cells resolve naturally in a few weeks. However, in the Downs syndrome children who do get leukemia, Palis and Steiner are studying a gene mutation common to them and why that mutation leads to cancer. They are using advanced technology to mimic the fetal blood system’s development.

Their project started with a germ of an idea and a $50,000 pilot grant from Wilmot. As supporting data emerged, the team received additional funding totaling more than $350,000 from St. Baldrick’s Foundation and, most recently, from Alex’s Lemonade Stand Foundation, which both support childhood cancer research. Their collaborative investigation continues.

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“This is why we do what we do — to get to see Sarah grow up.”

– Marcia Krebs, M.D.

Mendon Family Gifts Wilmot $50K in Honor of Daughter’s Extraordinary Care Sarah Moore’s life over the past year has been mind-boggling and, at the same time, miraculous. She spent more than 200 days in the hospital at Wilmot Cancer Institute.

Nine months of chemotherapy. Three major surgeries. She jokes that she got a new tibia for her 23rd birthday; her original leg bone was riddled with a type of cancer called osteosarcoma, a rare bone cancer that afflicts children and young adults. She suffered many complications: COVID, blood clots, infections.

Through it all — and especially now in her “cancer-free era” — Sarah and her parents, Connie and Bob Moore, have become enthusiastic ambassadors for Wilmot.

They have special affection for the team on the seventh floor of the cancer center (“WCC7”), which had become a homeaway-from-home.

“Wilmot and WCC7 completely saved my life, mentally and physically,” Sarah says.

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At the 2023 Discovery Ball, which is Wilmot’s major annual fundraiser, her parents raised their paddle for $50,000. The donation was for a lot of reasons, Connie and Bob Moore say.

Bob and Connie say they appreciate that Krebs made herself available by comforting the family via text messages, going to bat for Sarah when she was at her lowest and in need of support, often on Krebs’ days off.

First and foremost, it was to honor and thank their daughter’s multidisciplinary team, led by Adrienne Victor, M.D., M.S., the Wilmot oncologist who coordinates Sarah’s outpatient treatment; Marcia Krebs, M.D. the Wilmot oncologist who quarterbacked Sarah’s treatment on WCC7; and Susan McDowell, M.D., orthopedic oncologist and University of Rochester Medical Center surgeon, who brought compassion to Sarah during multiple surgeries.

The Moore’s donation is also an investment in the future. “Research is the only thing that’s going to save lives,” Connie adds.

“Sarah’s journey is going to be continuous, and what we’ve realized is that our journey is always someone else’s journey.”

“Dr. Krebs, the nurses, specialists, and the entire inpatient team gave us comfort and confidence in the dark and challenging times that were part of Sarah’s recovery,” Connie says. “I don’t know how we would have made it through without them.”

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She is a retired teacher, and Bob is a local technology executive and entrepreneur.

They live in Mendon, and say they are fortunate to have the means to have gone anywhere in the U.S. for Sarah’s treatment, and sought several opinions from prominent cancer centers elsewhere.

“At the end of the day,” Bob says, “everyone told us, ‘You’re in great hands. We wouldn’t do anything different than what Wilmot is doing.’”

“We are grateful for Wilmot’s care of Sarah and couldn’t imagine being anywhere else,” he says. “The osteosarcoma specialists all know each other, but it’s the care that matters. Dr. Victor shed a tear when she told Sarah she was done with chemo.”

Finding Reasons to Celebrate In the summer of 2022, Sarah, 22 at the time, had just graduated from Hampshire College in Massachusetts, and was working a temporary job as a day-care assistant as she awaited the start of graduate school at Nazareth College in Rochester that fall. One day in August, she noticed a small lump below her right knee, and by the next day, oddly, it had quadrupled in size and become very painful.

A trip to the emergency department and several confusing, frightening, and frustrating hours later, she was diagnosed with stage 2b osteosarcoma. Her tumor had quickly grown to 13 centimeters, larger than a softball.

Ironically, Krebs says, the intense pain and alarming size of her cancer may’ve ultimately been a saving grace, because no one could ignore the symptoms or dismiss the idea that cancer had struck someone so young.

Sarah’s recent tests indicate that she is now cancer-free. Indeed, the cure rates for localized osteosarcoma and her treatment

Sarah Moore, surrounded by some of her care team. From left to right: Colleen Feeney, NP, Sue Cupolo, PA, Grace Schrader, NP, and Marcia Krebs, MD.

regimen are nearly 80%. But, going above and beyond, Victor has coordinated an immunotherapy treatment program for Sarah that could boost her chances of a cure by another 10%. The immunotherapy is approved in Europe but considered investigational in the U.S. The WCC7 staff also did their best to lift Sarah’s spirits along the way.

For example, a year ago, on Nov. 1, 2022, Sarah received her first donor tibia and McDowell rebuilt her lower leg. She was recuperating on WCC7 and not feeling well.

A favorite physician’s assistant, Pranav Prabhn, knew that it was Sarah’s birthday on November 10, and arranged to have

her dog brought to the front doors of the Wilmot Cancer Center. Prabhn wheeled her down for a visit — while the nurses were decorating her hospital room with balloons, string lights, gifts, and treats.

The staff hijinks came at a good time; more medical trouble would follow soon after.

Unfortunately, the first surgery did not result in a positive outcome.

Streptococcus bacteria invaded a small area of her leg, and months of antibiotics in 2023 and another painful surgery were needed to heal the wounds. Once the infection had cleared, McDowell used a new donor tibia and hardware to rebuild Sarah’s leg again.

“After I was able to go home following all of the treatment,” Sarah says, describing an emotional time, “you sit and it’s quiet and it hits you that there was a stranger who selflessly made sure they would help someone else live. I would just sit there and cry because I had my life back.”

To celebrate the end of treatment, Sarah wanted to say thank you to the WCC7 team. Her mom arranged for an ice-cream truck to park outside of Wilmot for the nurses, staff, patients and families.

At home, Sarah is working with a physical therapist to regain strength and walk again, and has begun contemplating a career in nursing.

Sarah Moore and her parents, Connie and Bob.

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N E WS B RI EFS Caring for Patients as Humans with Uniquely Complex Lives Diego Villamarin, a second-year student at the UR School of Medicine and Dentistry, took part in a summer internship program at Wilmot this year — and became so captivated that he may specialize in cancer care.

He is also working with a Wilmot hematology/oncology fellow to conduct research in breast and lung cancer.

What struck him? Wilmot teams are adept at "caring for patients as humans with uniquely complex lives," he says. “Members of the care team… showed a passion for improving the day-to-day lives of their patients. Providers took time to fully address patients’ needs and to care for a patient’s emotional as well as health concerns.”

The Wilmot internship was designed to help diversify the field. (Less than 1% of oncologists are Black, Native American, or Hispanic, according to the American Society of Clinical Oncology.) Wilmot’s Cancer Research Training and Education Coordination (CRTEC) office supported the innovative program, which has plans to return next summer.

Diego Villamarin with Wilmot oncologist Maria McGreevy, MD.

Science Backs Mind-Body Tools for Cancer-related Anxiety Mindfulness meditation, music therapy, yoga, hypnosis, acupuncture — all of these therapies can be part of a patient’s evidence-based treatment plan, research shows.

Wilmot oncologist Alissa Huston, M.D., was part of a national expert panel that reviewed more than 100 studies to determine which “integrative oncology” therapies work best to calm patients’ anxiety and depression. The panel published its conclusions in the Journal of Clinical Oncology.

Mindfulness-based therapies such as meditation are most effective, studies show. This can be as simple as taking slow, deep breaths and repeating a positive affirmation: a prayer or a mantra such as “I am getting better every day.” This can be done while waiting for test results, for example.

One red flag: Over-the-counter supplements are not recommended for anxiety. Scientific data is inconclusive on their benefits, Huston says, and supplements can be dangerous due to interactions with certain cancer medications. Talk to an oncologist for more information.

A full range of integrative oncology therapies, at no cost, are available to all Wilmot patients.

On-site care is located at 125 Red Creek Drive, Henrietta, at the Pluta Integrative Oncology and Wellness Center. Videos and a YouTube channel playlist are also available online. Go to Wilmot.urmc.edu and search for Integrative Oncology videos.

Myers Medical Oncology Team Rallies Community to Create Rock Garden You might say they are a “rock” in the community for cancer patients and survivors.

Suzanne Thayer, an ambulatory technician at Wilmot’s Ann and Carl Myers Cancer Center in Dansville, N.Y., and her team, turned a walkway between the parking lot and one of the entrances into a community garden filled with painted rocks to brighten the spirits of patients. Several staffers, patients, and families from Dansville got involved in the project.

One patient, Zane Grabow — nicknamed “Big Z” — would often sign his MyChart messages “Big Z” to his oncologist, Jason Zittel, M.D., which prompted Zittel to respond with “Dr. Z.” That fun exchange became the inspiration for a “Dr. Z rock,” which features a superhero cape.

“He regularly gives us hope and when you’re a stage 4 cancer person, hope is one of the greatest things you can give,” Grabow says of Zittel. “I can’t say enough positive about that team. It doesn’t matter which person works on you. All of them are just kind, compassionate, caring people.”

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Wilmot has a New Medical Director Dan Mulkerin, M.D., was promoted to a newly created leadership position at Wilmot Cancer Institute. On September 1, he began serving as Medical Director and Associate Chief Medical Officer. His mission is to streamline Wilmot’s multidisciplinary cancer services between the hub location in Rochester and other locations and affiliations in western and central New York.

He will be responsible for quality improvements in clinical care, clinical IT infrastructure, pharmacy interactions, creating a uniform patient flow in outpatient and cellular therapy programs, developing a cohesive physician voice, and creating a collaborative network. Mulkerin was recruited two years ago from the University of Wisconsin Carbone Cancer Center to supervise regional operations. Last year, he led the opening of Wilmot’s 14th regional location, in Webster, N.Y. More than half of all Wilmot patients receive their care at facilities outside of the URMC campus.

Wilmot has a New Cellular-Treatment Leader One of the most impactful types of cancer treatment involves using advanced immunotherapies or transplanting robust immune cells in humans to replace cancer cells. Patrick Reagan, M.D., has been a leader at Wilmot in this area, and recently was named director of the Blood & Marrow Transplant (BMT) and Cellular Therapies program. He had been interim director since 2022.

Reagan has played a major role in bringing these cutting-edge immunotherapies to Wilmot patients, particularly those who have blood cancers — and also conducting pioneering research published in top medical journals. Currently, he is a co-investigator on a National Institutes of Health-funded research project to improve the way immune cells attack cancer and to reduce side effects of the treatment. Wilmot’s BMT program has become the largest program in the state outside of New York City, performing more than 4,400 cellular transplants.

NURSING NOTES In partnership with the UR School of Nursing, Wilmot collaborates with several researchers to improve patient care, while also supporting outstanding nurse clinicians who care for Wilmot patients daily at facilities throughout the central and western New York region.

Julie Berkhof, D.N.P., R.N., M.S., F.N.P.-.C, director of Regional Nursing at Wilmot, was one of four nurses to receive the Region Leadership Award from the New York Organization for Nursing Leadership (NYONL).

The award honors exemplary leadership within the institution, community, and the nursing profession.

Berkhof began her role at Wilmot when it had only five satellite locations; she now oversees nursing at Wilmot’s 14 community oncology facilities, using clinical expertise and operational knowledge to support these centers. Berkhof recently completed doctoral work that included integrating a geriatric screening tool for all new cancer patients older than 70.

Meghan Underhill-Blazey, N.P., is studying an interactive digital tool to provide quick facts and education for individuals about genetic testing. The goal: to get patients into testing faster, as test results can impact cancer treatment decisions. She is part of a multi-site grant and received $680,000 to conduct her work on a collaborative team; other institutions include Harvard School of Public Health, Dana Farber Cancer Institute, University of Southern California, and Northeastern University. Underhill-Blazey is a member of Wilmot’s Cancer Prevention and Control (CPC) research program.

Jamie Oliva, N.P., recently opened a bone marrow transplant clinical study — with a digital twist. She theorizes that a mobile-health app could more efficiently track a patient’s earliest symptoms of a condition known as graft-versus-host disease (GVHD). This is a potentially serious complication of bone marrow transplants, and occurs when the donor’s stem cells attack the patient’s healthy cells. The onset of GVHD is unpredictable. A mobile app may allow patients to report new symptoms outside of routine clinic visits.

Oliva is breaking new ground: No other studies exist, she says, to evaluate using a mobile app to track GVHD symptoms. Oliva was recently elected as a Distinguished Fellow in the Nursing Academy at the National Academies of Practice.

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A DVA NC E M EN T N EWS

A Salute to the Community Wilmot Cancer Institute community supporters are out in force each year, leading fundraising events and honoring their loved ones. From lemonade stands to motorcycle rides, these feats happen at the hands of dedicated, talented people who have been touched by cancer and have a heartfelt appreciation for Wilmot and its core mission — to provide the highest-quality treatment, through innovative science, medicine, and education, for anyone burdened by cancer in the upstate New York region.

Some of these events have bloomed quickly. Take, for instance, the Big Dan Classic Cornhole tourney in Scottsville, N.Y., in memory of Dan Merritt. It’s only in its second year, but 80 teams signed up and raised nearly $13,000 for Wilmot.

Other events are longstanding community outings — such as Wilmot Survivor’s Night at the Rochester Red Wings baseball. game, which takes place annually each summer.

Thank you to all supporters! During the prime spring-to-fall outdoor event season, Wilmot received more than $200,000 this year from dozens of large and small community groups.

BE uninTIMidated In loving memory of Tim Wesley, a group known as BE uninTIMidated hosts two annual events, a casino night and golf tournament. This year, Denise Wesley and her two daughters, Mackenzie and Skylar, presented a check to Wilmot leaders Jonathan Friedberg, M.D., and Hucky Land, Ph.D., for $25,000 in support Wilmot Cancer Institute and its effort to achieve a special designation and research grant from the National Cancer Institute. The support was important to Tim and continues to be an ongoing commitment for BE uninTIMidated.

Cruisin’ Against Cancer motorcycle ride The Finger Lakes Chapter of Renegade Pigs held its 2nd annual Cruisin’ Against Cancer benefit motorcycle ride around Canandaigua Lake on July 16. The club is a nonprofit organization whose members include law enforcement and fire service personnel. The group raised $3,215 in support of Wilmot’s Sands Cancer Center location.

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Survivors Night at Red Wings This summer, Wilmot Cancer Institute’s annual Survivor’s Night with the Red Wings at Innovative Field included approximately 2,000 cancer survivors and their families, faculty, staff, and community supporters, including Rochester Mayor Malik Evans.

Lemonade

Pawluk Golf Tournament

Cousins Haylee Swanson and Presley Kibler sold lemonade for Wilmot in their hometown of Nunda, N.Y., in Livingston County - and the community showed up!

They raised $600, which they brought to Rochester and presented to Wilmot Director Jonathan Friedberg, M.D., in support of cancer research and care. The lemonade sale had special meaning, as Haylee’s mom, Meghan Lowell, was treated for lymphoma in 2013 and then again, a few years later. The girls are considering a hot dog stand for next summer.

Tom Pawluk, center, is passionate about fundraising for his local community and has supported Wilmot’s Sands Cancer Center for the past 18 years.

This summer, in loving memory of his wife, he coordinated the Annual Margery Coughlin Pawluk Golf Tournament on June 16, at the Reservoir Creek Golf Course in Naples.

The tournament raised $9,820 in support of the Pawluk Patient Needs Fund at Sands.

Big Dan Cornhole

MC’s Dugout

In memory of Dan Merritt, a beloved friend, father, and brother, the 2nd annual Big Dan Classic Cornhole Tourney was held in April at the Scottsville Fire Department in partnership with 585 Cornhole.

Participants raised $12,871 in support of Wilmot.

The 2nd Annual MC’s Dugout’s Brian Reed Memorial Golf Tournament raised $8,407 for Wilmot.

The event was held at Salmon Creek Country Club on July 16. It was coordinated by family and friends in loving memory of Brian, and hosted by MC’s Dugout.

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C OE

Community Outreach and Engagement improves the health of local and regional residents through partnerships.

Resisting the Urge: How One Smoker Quit a Decades-Long Habit The primary mission of Wilmot Cancer Institute’s Community Outreach and Engagement (COE) office is to help reduce the burden of cancer in the Rochester region and improve the health of residents through community partnerships. Tobacco-related cancers are a major problem in the 27 counties from which Wilmot draws patients. Smoking is not just a primary cause of lung cancer, it is also related to other cancers, including bladder, colorectal, and acute myeloid leukemia. The COE’s Tobacco Quit Center was designed to address the issue.

Jack Pilarski, of Pittsford, represents a success story. He had been smoking for 60 years. After receiving information about Wilmot’s Tobacco Cessation Program, he decided to take the plunge.

Below he shares insights on how he quit.

Why did you decide to quit?

I had been, not pressured, but encouraged by my wife and son for the last several years. I kept saying, I will, I will, and then my wife sent me this thing she received, regarding a quit-smoking program at Wilmot. I took it upon myself to write an email and asked for more information and out of that, I got a call. Then, I went through a quick interview with a specialist and we talked about what would be involved. She offered nonsmoking aids, so I opted for lozenges.

I figured I’ll take any help I can get. She also offered text messages to be sent to help with the process of quitting. So, we started the program. As of June 6, 2022, I stopped smoking. And that was it.

Jack Pilarski with his wife, Paula, and son, Ian Pilarski.

How did you do it? What worked for you?

How does it feel to have quit?

Probably a combination of many things. The lozenge itself is more of a crutch, which helped me as opposed to just going cold turkey.

The first day in the program, it calls for taking one lozenge every four hours, six a day. On the first day, I tried that. After the fourth one, I got nauseated. Maybe it was a little overdose of the nicotine.

So, I said, I’m just going to back off if that’s okay, which I did. If I had an urge, I could take the lozenge, but I found that I didn’t need to take it every couple of hours. I just went on an as-needed basis.

It feels great! There are times when I will stop and just take a deep breath and realize how nice it is to take a full breath. My time of being a smoker is now a thing of the past. I don’t miss the smell or all of the games I used to play, sneaking around to get away and have a cigarette. There’s a time every year where I join some high school friends in Georgia to play golf and stay at someone’s house. I would have to sneak out of the house to have a cigarette.

Last time we went, I didn’t have to do that and it was so great.

I also found the text messages to be very helpful. It was a reminder that I wasn’t doing this all on my own. The messages were probably three or four a week. Each one was different but all were encouraging. They covered a variety of topics: encouragement, to be aware of triggers or times when you want a cigarette, and then reiterating that you are a nonsmoker. For me, I would have a cigarette with my morning coffee or sometimes when I was away from others. Stressful situations also created urges to smoke.

What can you tell others who are thinking about quitting?

Once I recognized those times when I always smoked, I would try to skip past them. The text messages encouraged me to visualize myself as a nonsmoker. The urges became less frequent. In each instance, it became easier. With stress, deep breaths helped and convincing myself that I could get through this situation without smoking. With each passing day of not smoking, it became easier

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and when I realized that I was in control, not smoking became my new habit.

I eventually weaned off the texts. I opted for less and then got used to not having them and quit receiving them months ago.

With encouragement from my wife along the way, I am now at a point where I don’t have those urges. Even with the recent passing of my sister, I was able to avoid the urge to smoke.

When the urge arises, or when those habit times occur, you can get over the hump and feel good about doing so. Eventually it becomes a reality. The self-satisfaction of not smoking makes you feel great. You have been able to do something positive not only for yourself, but for those who care about you. It’s a great feeling. A great accomplishment.

Wilmot Cancer Institute’s COE Office has a free, smokingcessation program that is open to anyone living in the 27 counties around Rochester. To learn more or sign up, call (585) 504-9461 or email quitcenter@urmc.rochester.edu or visit wilmot.urmc.edu/quitsmoking

A DVA NC EM E N T N E WS

Discovery Ball 2023: With Garden-Party Ambience, Generosity Grows The 2023 Wilmot Discovery Ball raised nearly $500,000 — the highest amount in recent years — from more than 400 attendees at the Joseph A. Floreano Rochester Riverside Convention Center on Saturday, May 6. The funds go toward Wilmot Cancer Institute’s transformative cancer research programs, and to provide top-level oncology care and train the next generation of clinicians and scientists.

This year’s event ushered in spring with garden party vibes, festive games, and blooming décor. Wilmot leaders extend their gratitude to all sponsors, donors, community members, patients and families, who supported the event. Special acknowledgement goes to co-chairs Victor and Eileen Salerno, and the committee members: Scott and Christina Burdett, Kathy Landers, Michael Linehan, Mary Beth Molisani, Mike Reed, Angela Uttaro, PJ Wilmot, Richard Yates, John and Georgiana Zicari.

With money raised at special events like the Discovery Ball, Wilmot is expanding its developmental therapeutics capabilities, which will allow researchers to more quickly convert key discoveries into new cancer therapies for patients.

It’s not too late to make a donation to the Discovery Fund at event.urmc.edu/discovery2023

Christine Skivington, center, and her family.

Two years ago, she was diagnosed with an aggressive type of breast cancer at age 37, and was treated at Wilmot. Her inspirational story and video was a centerpiece of the Discovery Ball.

Eileen and Victor Salerno

Thank you to the 2023 Discovery Ball sponsors $10,000 MOMENT SPONSORS Hahn Automotive Peter & Kathy Landers Judy Wilmot Linehan & Family Victor & Eileen Salerno WeTheHobby Tom & Colleen Wilmot Richard & Caroline Yates $7,500 CONNECTION SPONSORS Interlakes Oncology Hematology, P.C. Drs. Jane Liesveld & Deepak Sahasrabudhe Connie & Bob Moore Postler & Jaeckle Corp. $5,000 COLLABORATION SPONSORS George N. Abraham, MD Alesco Advisors American Packaging Corp.

Jack & Lisa Baron Brown & Brown of New York, Inc. Delphinus Medical Technologies, Inc. DGA Builders, LLC Flaum Management Company, Inc. Jim & Donna Hammer Joseph & Elaine Bucci Family Foundation Harris Beach, PLLC

Harter Secrest & Emery LLP KitePharma Dr. Hucky Land and Colleen Buzzard Mary Kay Hayes Charitable Foundation M&T Bank National Electrical Contractors Association Paychex, Inc. The Pike Company, Inc. Pluta Cancer Center Foundation St. John Fisher University Schuler-Haas Electric Corp Strong Memorial Hospital Matt & Julie Tipple URCC NCORP Research Base URMC Department of Gynecologic Oncology URMC Department of Imaging Sciences URMC Department of Medicine URMC Department of Neurosurgery URMC Department of Pathology & Laboratory Medicine URMC Department of Radiation Oncology URMC Department of Urology URMC Division of Supportive Care in Cancer Ward Greenberg Heller & Reidy LLP John Zicari – Stifel SZK Wealth Advisory Group

$1,500 OPPORTUNITY SPONSORS Billitier Electric, Inc. Bonadio & Co., LLP Bristol-Myers Squibb Company Mike Buckley Cobblestone Capital Advisors, LLC ESL Federal Credit Union Marc & Ann Iacona The Maess and Kokanovich Family Brian & Julie Martin Passero Associates Tom & Betty Richards Rochester Area Community Foudation Roswell Park Cancer Institute Doug Weins UNDERWRITING SPONSORS Drs. Barbara and Dennis Asselin, Sweet Indulgence Sponsor O’Connell Electric Co., Cheers to You Sponsor LeChase Construction and Affiliated Companies, Champagne Sponsor Geneseo Orthodontics and Pediatric Dentistry, Valet Sponsor

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Community Support Leads to RecordBreaking Wilmot Warrior Weekend

Calvin Cole, PhD, (left) assistant professor of Surgery and Orthopedics, and Jerome Underwood, a Wilmot Cancer Institute Advisory Board member, pose for a photo before the Wilmot Breakaway Ride starts.

Thank you! This fall, Wilmot Cancer Institute held its first annual Warrior Weekend — raising more money and hosting more participants than any time in recent history.

The event welcomed patients, families, community members and University of Rochester and Wilmot faculty and staff to bike, walk, run, and fundraise. In previous years, the event offered a single-day walk/ run opportunity. That very successful grassroots community event was looking to level up, and a bike ride was added this year to evolve the Warrior Weekend into the premier charity event of its kind in the region.

Warrior Weekend aligns with the UR goal to support research excellence.

Nearly 300 bicycle enthusiasts took part in the inaugural Wilmot Breakaway Ride on Saturday Sept. 30.

Riders had the choice of three routes between Rochester and Canandaigua, up to 75 miles long.

On Sunday, Oct. 1, approximately 1,300 runners and walkers took part in the 11th Annual Wilmot Warrior Walk/5K – a bigger crowd than any other year since the event began — on Sunday, Oct. 1. A few brave warriors managed to ride on Saturday and walk/run on Sunday at Genesee Valley Park.

More than $350,000 was raised, nearly tripling last year’s support. This number may grow further as donations are finalized. Fundraising is vital to strengthening cancer research and survivor care at Wilmot, but importantly, the event also inspires and motivates faculty and staff in their life-saving work.

In addition to the athletes, more than 100 volunteers helped to ensure the weekend ran smoothly. Plans are already happening for the 2024 Wilmot Warrior Weekend. Stay tuned for more information and other ways to “leave cancer in the dust.”

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Members of Team Jimbo pose with their bikes before cycling in the Wilmot Breakaway Bike Ride. The team raised more than $9,000 for Wilmot, in honor of their friend, Jim Kersting, who is currently being treated for cancer.

University of Rochester President Sarah Mangelsdorf poses for a photo with her husband, Karl Rosengren (left), Patrick Cunningham, Wilmot Advisory Board Member and deputy mayor of the City of Rochester, and Cathy Pereira.

Jason Mendler, MD, a leukemia specialist at Wilmot who won an award for his time in the 5K, shares a hug with Ralph Olney, a Wilmot volunteer and leukemia survivor.

Walkers begin the 1-mile route during the 11th Annual Wilmot Warrior Walk + 5K, part of the Wilmot Warrior Weekend.

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Permit No. 780 Rochester, NY

Wilmot Cancer Institute 601 Elmwood Avenue, Box 704 Rochester, NY 14642

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WILMOT WARRIOR WEEKEND leaving cancer in the dust Thank you to our sponsors Constellation Brands Janssen Wegmans Broadstone Net Lease Inc.

Towpath Bike Trident Precision Manufacturing Van Bortel Ford WROC Tompkins Financial

Dunkin’

Texas de Brazil

Crazy Dog T-Shirts

Ryder

Genentech Neutral Ground Coffeehouse

St. John Fisher University The Dawgs

WARRIOR WEEKEND

Wilmot Cancer Institute Advisory Board Members, '22-'23 Richard Yates, Chair Geri Biddle Moore Mark Cleary R. Scott Burdett Patrick Cunningham Garth Hankinson Kathy Landers John McKenna Ralph Olney Walter Parkes Barbara Pluta-Randall Mary Pluta Ronald Pluta Vic Salerno Erika Stanat

Eduardo Torrado Rev. Virginia Tyler Smith Jerome Underwood Angela Uttaro Kristin Vanden Brul Paul "PJ" Wilmot Keith Yeates John Zicari Emeritus Members Judy Linehan Jim Ryan, Jr. Ex-Officio Members Kellie Anderson Clare Flanagan Jonathan W. Friedberg, MD, MMSc Hartmut “Hucky” Land, PhD

David C. Linehan, MD Mark Taubman, MD Honorary Board Members Dr. George Abraham Elaine Bucci Michael Buckley Rina Chessin Elaine Del Monte Richard DiMarzo Malik Evans Joan Feinbloom Janet Felosky James Hammer Paul Hanrahan Gary Haseley Mark Kokanovich Michael Linehan

Ronald Maggio Steve McCluski Jett Mehta Carol Mullin Michael Norris Jeff Pierce Cheryl Pohlman Larry Rabinowitz Don Rhoda Gregory Smith Steve Whitman Timothy W. Williams Dennis Wilmot Timothy P. Wilmot Colleen Wilmot Thomas Wilmot Bruce Zicari, II