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.
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.”
Cancer Led to Determination
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.”
Whatever it Takes
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.”
‘This is Why We Do It’
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.”
Connecting With Others
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.
Treat the Whole Patient
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.
Becoming Best Friends
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.”
‘Mayra With a Purpose’
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.”
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