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During its 10th annual MPN Heroes® recognition event, CURE® honored the contributions of eight individuals who have made a difference within the field of myeloproliferative neoplasms (MPNs).

These eight individuals received their awards during an in-person celebration — which was also live-streamed to a virtual audience — hosted around the 64th American Society of Hematology Annual Meeting in New Orleans.

Support for the 2022 MPN Heroes® was provided by Incyte.

Kerry Fraser, retired National Hockey League (NHL) referee and patient with an MPN, was the event host and emcee for the recognition event. Despite facing many irate hockey fans throughout his career that spanned three decades, he noted that the scariest and toughest thing he ever had to face was when he was diagnosed with an MPN in November 2017.

He thanked all of the honorees for their tireless efforts in pushing the needle forward in the space and showing compassion for all patients with an MPN.

“(Without your) determination and your compassion, the MPN community would not be what it is today,” Fraser said. “Patients like me would not be thriving. So, on behalf of all MPN patients in the entire MPN community, thank you for all you've done, and all you will continue to do.”

Former “Saturday Night Live” cast member and co-creator of Showtime’s new comedy series “I Love That for You,” Vanessa Bayer served as the keynote speaker during the recognition event.

Bayer, who was diagnosed with acute lymphoblastic leukemia — a type of blood cancer, and the most common pediatric cancer — at the age of 15, explained how her diagnosis shaped who she is today.

“Having cancer gave me a determination not to be underestimated,” she said during her keynote. “And I think that has a lot to do with where I am today. I can almost pinpoint it to a single moment where this determination really started. I was always a pretty good student, but I remember being in the hospital, just a few days after being diagnosed with leukemia, and my honors biology … teacher called me.

“She said, ‘Vanessa, don't worry about schoolwork anymore. Just focus on getting better. You don't need to worry about getting good grades anymore or anything like that.’ Now, I'm sure she was very well-intentioned with this phone call. But I hung up the phone thinking why because of this random thing that happened to me … should I get worse grades, and then go to a worse college and then have a worse future?”

Bayer explained that she was upset after that conversation and felt everything was unfair, but she was determined to not let cancer define who she was.

“As a result, I was such an overachiever,” she said. “I graduated from high school with straight A's and went on to attend an Ivy League school, the University of Pennsylvania.”

She highlighted the significance of events such as these and what they represent.

“It's about the patients, caregivers, researchers and doctors who are making a difference in the world of MPNs,” she concluded. “Thank you for all of the incredible work that you do.”

Nominated by Kapila Viges, Dr. Raajit Rampal, an associate attending physician at Memorial Sloan Kettering Cancer Center in New York, serves as a scientific adviser to the MPN Research Foundation. With this, he works with other specialists to develop new ideas and initiatives in hopes of bringing change to the rare blood cancer space.

“Those are lofty goals, but in order to try to solve these problems, you have to have a critical mass of people who are highly invested and passionate about this,” Rampal said. “And that's part of what the foundation does is bring these people together. And that gives patients hope; that gives me hope.”

He noted that although the space is changing and improving, he still thinks about the people who didn’t have the ability to access those developments.

“That has to continue to drive us forward,” he concluded. “Everybody sort of has their mission that they have to fulfill in their life. And I, for whatever reason, have (the) ability to do science and to take care of patients. I don't know what could be better for me than that.”

Dr. Steven Applebaum, a hematologist oncologist at UCLA Health in Pasadena, California, has been a physician for more than three decades. And during that span, one patient has been with him the entire time.

Stephanie Covington Armstrong presented to the emergency department more than 30 years ago with severely elevated hemoglobin levels. Applebaum was a fellow at the time and oversaw her case and expressed that she needed to live her life to the fullest and not wait to expire. That conversation, she recalled, made her realize he needed to be her health care provider.

Thirty years later, she considers herself the patient that has been with him the longest.

“I nominated him because I realized that (he is the) reason I have such a great life,” she said. “And the reason I'm such a healthy, happy individual has a lot to do with him being my doctor and his outlook on life. I really, really love the way he shows up for his patients.”

Health care providers have the moral obligation to not only find and develop treatment breakthroughs, but they need to be able to bring them to those who need them most, according to Dr. Naveen Pemmaraju.

“The whole goal here is can you move the field forward, each and every day,” Pemmaraju, an associate professor of medicine at The University of Texas MD Anderson Cancer Center in Houston, said. “We work late nights, weekends, holidays; whatever it takes for patient care, for research demands, and also for ideas and thinking.”

For Pemmaraju, who was nominated by Dr. Gabriela S. Hobbs, being a hematologist oncologist is not just a job for him.

“I'm available 24/7 … this is a calling or a passion,” he said. “So, I look at myself as an ambassador for my hospital, my institution, my patients and my rare disease fields and I take that with great honor.”

Natasha Johnson, who was nominated by Dr. Andrew Kuykendall, is a malignant hematology nurse practitioner at Moffitt Cancer Center and Research Institute in Tampa, Florida.

As a nurse intern, Johnson spent time on an oncology unit where she met a patient with acute lymphocytic leukemia. She would eventually marry that patient and they went on a treatment journey together that consisted of bone marrow transplants.

Unfortunately, he died as a result of complications from one of his transplants. However, she said that experience made her a better provider.

“Because of my experience, I definitely can try to put myself in the same role as the caregivers and look at the whole picture when I'm taking care of the patient,” she said. “I really try to get engaged (with them) and I tell them, ‘I'm a safe space, so just lay it out.’ (And) we'll talk about it and do what we can to make things better.”

Jessica Kuhns, who was nominated by her son Jaden Persaud, was diagnosed with a myeloproliferative neoplasm not otherwise specified in 2016.

A resident of Gibsonia, Pennsylvania, Kuhns credited several advocacy organizations guiding her during her journey. Following her diagnosis, she joined the Facebook group MPNs R US for further clarity regarding her disease. Now, she serves as an Imerman Angel.

As an Imerman Angel, Kuhns connects with people who have similar cancers and serves as a sounding board.

“I try to connect with them on a personal level and let them know that I've been there; that I feel what they’re going through; that I try to connect with them and let them know that they’re not alone,” she said.

Dr. Ghaith Abu-Zeinah, nominated by Jeffrey S. Puglisi, is an assistant attending physician at NewYork-Presbyterian Hospital and specializes in the treatment and research of myeloproliferative neoplasms and related blood disorders.

Abu-Zeinah, who is originally from Jordan, noted that his interest in this particular field was routed in being able to establish long-term relationships with his patients.

“It’s important to have that strong relationship with patients so they feel comfortable expressing their fears and their anxiety,” he said. “We have to understand at a personal level, how patients are doing and not just deal with the objective numbers and objective bone marrow results and things like that.”

Abu-Zeinah also serves on the medical advisory board of the Cancer Research & Treatment Fund. During his tenure, the group put together a podcast around the topic of mental health in patients with MPNs. He explained that not many health care professionals are adequately trained in mental and emotional wellbeing.

“It’s important that instead of focusing only on the blood counts … we have to understand if going through this experience, the diagnosis itself and the treatment course has affected their lifestyle, their mental wellbeing,” he added.

Justine Hallahan was a caregiver to her mom’s partner, Matt, who had polycythemia vera.

Hallahan stepped in, as her mom, Barb – who nominated her for the award – had to maintain her full-time job as Matt’s diagnosis made it difficult for him to work. So, Hallahan would take Matt to his various appointments and serve as his advocate when the pair believed physicians were not actively listening to his concerns.

Although Hallahan said it was a depressing time since they knew there was no cure for the disease, she also noted that the diagnosis ended up being a blessing as well: “He grew into my best friend,” she recalled.

Unfortunately, Matt died in a house fire on Jan. 12, 2020. For Hallahan, she said she doesn’t consider herself Matt’s caregiver. Instead, she explained, she considered Matt to be her caregiver, in turn providing her son with life lessons.

Moreover, Hallahan said she doesn’t view herself as a hero. “I don't feel as though I am a hero,” she said. “This is humanity. This is what we do for the people we care for.”

After receiving a diagnosis of primary myelofibrosis, Mayra Andujar Delgado said she made the choice to not feel sorry for herself but instead make a difference.

One of the first things she decided to do was participate in a 5K for breast cancer research. However, as an avid baker, she chose to sell baked goods during the event. She noted she was the top fundraiser and exclaimed that it was due to her coconut rum cakes.

Recently she participated in a local radio show in Orlando, Florida, to provide insight into the rare blood cancer.

“I’m here to bring awareness to the community in Central Florida,” she said. Everywhere that I go, I say, ‘Mayra with a purpose.’”

Erik Lohrmann, vice president of CURE Media Group, noted that the event provides an opportunity to recognize those who dedicate their careers and lives to serving the community of patients living with MPNs.

“We see their collective passion, and commitment to the MPN community,” he said. “Their stories are inspirational. Each worthy of being called an MPN hero.”

For more news on cancer updates, research and education, don’t forget to 

Articles

CURE® celebrated the work of eight individuals who go above and beyond to better the lives of people living with myeloproliferative neoplasms, a group of blood cancers. 

CURE® Salutes 8 Individuals’ Efforts During 10th Annual MPN Heroes® Program

CURE Media Group recognized Margaret Campbell, B.S.N., RN, as the winner of its 2022 Extraordinary Healer® award, which honors nurses in the cancer community who strive to go above and beyond their call of duty.

Essays were submitted by colleagues, patients and family members identifying Campbell, two finalists and almost 100 other Extraordinary Healer® nominees, all detailing the noble acts of oncology nurses, from staging a last-minute wedding for a patient who had days to live to spending more than a decade guiding a patient through their breast cancer journey.

The Extraordinary Healer® award was given April 27 during a hybrid celebration held in conjunction with the 47th Annual Oncology Nursing Society Congress.

The night featured a keynote address from award-winning actor, producer and cancer advocate Patrick Dempsey. During his speech, Dempsey, who is best known for his portrayal of Dr. Derek Shepherd on the hit ABC series “Grey’s Anatomy,” discussed his mother’s journey with ovarian cancer as well as what led him to launch the Dempsey Center in Lewiston, Maine, in 2008.

Of note, the Dempsey Center is not a cancer treatment facility. It provides services that support healing and symptom management to patients with cancer and their families free of cost.

Dempsey talked about being live in person again for the first time in several years and expressed his gratitude to all in attendance, both in Anaheim and those watching around the world.

“Why are we here?” he asked. “What is our purpose in life? (It is) to lift up the people who are in need to give them the love (and) compassion (that) they so deserve.”

Campbell, a research nurse who has worked at Dana-Farber Cancer Institute in Boston since 2003, was nominated by her colleague, Dr. Nancy Lin, associate chief of the Division of Breast Oncology in the Susan F. Smith Center for Women’s Cancers at Dana-Farber.

Lin referred to Campbell as a “quiet hero” who, despite very little recognition — she is often not included as an author on published studies and doesn’t present medical data to an audience of her peers — balances patient obligations with the demands of the trials that have led to advances in the breast cancer space.

“I have witnessed how Margaret always goes above and beyond in communicating with patients and delivering outstanding clinical care,” Lin wrote in her nominating essay. “She takes extra care to make sure that all trial requirements are met, while also asking patients about other commitments (vacations, graduations, weddings) so that the scheduling can be adjusted to accommodate important events in patients’ lives. She advocates for her patients in ways big and small. In short, she cares for the whole person.”

The other finalists for the Extraordinary Healer® award were Livia Szeto, B.S.N., RN, OCN, a research nurse at the University of Chicago Medical Center, and Tammy Allred, RN, OCN, a nurse navigator at UNC Lineberger Comprehensive Cancer Center in Chapel Hill, North Carolina.

Allred was nominated by Darlene Burns, of Hampstead, North Carolina. In her nominating essay, Burns wrote that Allred dreamed as a child to have a mobile clinic to help treat children in indigent communities around the United States.

Although the allure of driving a mobile clinic faded after her graduation in 1985, Allred became interested in the newly emerging specialty of cancer care. Burns wrote that Allred saw oncology care as an opportunity to heal the human spirit, if not the disease.

And for 16 years, Allred has been doing just that as a nurse navigator at UNC Lineberger Comprehensive Cancer Center.

“It’s my dream job,” Allred said. “I look at every one of my patients as if they were my family members and I treat them as I would (want to) be treated. I build close relationships with patients, and they know they can call me day or night if they need anything. One of my patients with metastatic cancer and kidney failure totaled his pickup truck while driving to dialysis. He talked to me about ending his life the day he totaled his car because he felt like he was fighting a losing battle, having cancer, kidney disease and now, no way to get to dialysis. We are working to arrange for in-home peritoneal treatment and I’m working with agencies to get him a new truck. We saved him by showing him we care.”

Szeto was nominated by her colleague Dr. Christine Bestvina of the University of Chicago, who highlighted Szeto’s dedication and loyalty to her patients there, where she has worked since 1987.

“For the majority of her career, she has served as an oncology nurse navigator, working primarily in thoracic oncology,” Bestvina wrote in her essay. “I have been at the University of Chicago on faculty for less than five years and having Livia’s foundational knowledge of the university and those who work here has been essential. Throughout her years, she has facilitated strong relationships across disciplines, from interventional radiology to intravenous therapy to bed access. She is able to use all of these relationships to improve care of her patients by enabling early access to services our patients desperately need.”

Bestvina also commended Szeto’s ability to connect to her patients in a manner that allows her to elicit a patient’s sensitive information, from illicit drug use to fears at the end of life. Bestvina said that by enabling her patients to express their needs and sensitive information, the providers can take better care of the patients.

Originally a clinical trial nurse, Szeto became a nurse navigator six years ago and now helps care for patients enrolled in trials and those who are not.

“That way the patient doesn’t have to interact with so many different nurses,” Szeto explained. “There’s just one primary nurse taking care of the patient. The navigator role can be pretty complex. You’re not only taking care of the patient, but the family as well, helping them find their way through the health care system. They encounter many different specialties and need someone to help them understand them all.”

Kristie L. Kahl, vice president of content at MJH Life Sciences™, the parent company of CURE Media Group, spoke from the heart and highlighted a personal experience that spotlighted the effect oncology nurses have on their patients as well as their loved ones.

“As I sat down to think about what I wanted to say to highlight how far we’ve come in the cancer space in just 20 years, I’d be remiss not to share my own story and appreciation for every one of you in this room,” she said.

Kahl was referencing the cancer space over the past two decades as 2022 marks CURE®’s 20th year in circulation. She recalled her childhood friend, Krista, who had received a diagnosis of Ewing sarcoma at aged 15 years in 2003 — just one year after CURE®’s founding. Although doctors gave Krista a poor prognosis, she had no evidence of disease eight months later. But the disease returned in 2005 and it had spread to her lungs. Kahl said she and her friends would spend their weekends visiting Krista at Children’s Hospital of Philadelphia, where, she said, she learned how valuable oncology nurses were.

“It was then, to me, each and every single one of you in this room became a hero to me,” she said. “Before working for CURE, before anything, you all in this room wore a cape in my eyes. I was only 15, but the impact that Krista’s nurses had on my life, in addition to hers, are indescribable.”

Krista died from her disease in 2007, and Kahl she said she couldn’t help but look back at how far the space has come since.

“And a large part of that success is each and every one of you sitting in this room tonight,” she concluded.

The event was sponsored by Bristol Myers Squibb and Janssen Oncology, which is a wholly owned subsidiary of Johnson & Johnson. Peg Esper, region associate director in the U.S. Field of Medical Oncology at Bristol Myers Squibb, noted that not everyone can fulfill the responsibilities of an oncology nurse.

“Being an oncology nurse is really not for the faint of heart. I believe that you give a small portion of your soul to every patient and caregiver that you touch, you become their confidant, their resource person, the person they yell at, complain to, cry with, and hug every time they come to the clinic or the hospital,” said Esper, who spent several decades as an oncology nurse before joining the pharmaceutical company. “They trust you. They depend on you.”

Christine McDonough, marketing director for multiple myeloma at Janssen Oncology, said oncology nurses fulfill a larger purpose in life.

“You speak up for your patients when they don’t have a voice,” she said. “You support your health care team and despite burnout and frustrations, you somehow figure out a way to soldier on, giving it all you have, because to you, it’s worth it.…For you, oncology is not just a job; it’s a purpose in life.”

Erik Lohrmann, vice president of CURE Media Group, acknowledged those who made the event possible.

“Our industry partners, BMS and J&J. On behalf of MJH Life Sciences™ and all attending, thank you for making tonight possible,” he said. “My CURE® staff, who work unbelievably hard to bring our events to fruition, thank you. Lastly, and the reason we’re here tonight. The oncology nursing community. CURE® is proud to shine a spotlight on a profession that routinely goes above and beyond for cancer patients. Thank you for all you do.”

“(This event) provides (us) an opportunity to recognize those that dedicate their careers (and) their lives, to helping patients,” Lohrmann said, “renewing perspective, reminding us why we entered the health care field.”

“I speak on behalf of myself and CURE® in that we appreciate those who serve on the frontline during what can be one of the scariest and most overwhelming experiences a patient and their loved ones can face,” Kahl said during the ceremony. “I would like to thank all of the frontline workers with us tonight for everything you have done in the last two years, never skipping a beat to ensure your patients could continue treatments as the COVID-19 virus turned many of our worlds upside down. From the bottom of our hearts, we thank you.”

For the first time in three years, CURE® welcomed 500 attendees in person and hundreds more virtually to honor the 2022 Extraordinary Healer® award recipient. 