During its 11th annual MPN Heroes® recognition event, CURE® honored the contributions of eight individuals who made a difference in the field of myeloproliferative neoplasms (MPNs).
Eight MPN Heroes were honored at the 11th annual MPN Heroes event.
These eight individuals received their awards during an in-person celebration hosted around the 65th American Society of Hematology Annual Meeting in San Diego.
Support for the 2023 MPN Heroes® was provided by Incyte.
The event was hosted by masters of ceremony, Esther and Andrew Schorr, who cofounded Patient Power. Andrew also has a personal connection to MPN, as he was diagnosed with myelofibrosis in 2011.
“I’ve been living all that time … with a pretty good quality of life. And I know, let’s face it, that’s not everyone’s story. But the heroes that you will meet tonight are rewriting that history for more and more of us,” Andrew said during the ceremony.
Jane Fonda, Academy Award-winning actor, author, producer, activist and fitness guru, was the keynote speaker for the MPN Heroes ceremony. In September 2022, Fonda announced that she received a diagnosis of non-Hodgkin lymphoma and was undergoing chemotherapy. Three months later, in December 2022, shortly before her 85th birthday, she announced that her disease was in remission.
She discussed her experience speaking with the MPN Heroes before the event and recognized how important a sense of community is for patients.
“Community in life and everything is so important. … I have had the honor to meet the heroes, and have my picture taken with them. And I talked to them. And it’s clear that almost every single one that I spoke to, how community has been important to them, the community of doctors, nurses, family, friends, colleagues,” Fonda said during a Q&A session.
Funding for Research
Nominated by David Boule, Thomas Silver, board president of the Cancer Research and Treatment Fund in New York, works with the organization to fund research focused on MPNs. The Cancer Research and Treatment fund, for which Silver has served on the board for 12 years, has funded millions of dollars for MPN clinical trials.
In addition, he has a personal connection to MPN, as his good friend and fraternity brother, Nick, was diagnosed with myelofibrosis and underwent a bone marrow transplant.
“Nick was able to get the transplant and now he’s alive,” Silver said. “That type of technology advance, that type of research that leads that technology advance, we just need more and more of them to try to help find cures. And we’re just really excited about the fact that there’s the next generation of people that are coming up that will make this grow and be more successful in the future.”
Trust and Confidence
Dr. Shamim Salman is a hematologist-oncologist at Richmond University Medical Center in Staten Island, New York who was nominated as an MPN Hero by Cherrell White. She has dedicated years to providing care to patients with MPNs, while also mentoring interns on their future impact on this patient population.
Salman places an emphasis on providing a personal aspect to the care of every patient with MPN.
“Every patient needs that little personal touch and respect, to interact with the patient first as a human being one to one, not just a patient and number,” Salman said. “And in the first few minutes, they can sense that this doctor is taking a personal interest in me, the trust and confidence the happiness on their face. That’s your success. That makes you a good doctor.”
‘An Admiral Directing a Captain’
Patrick Buxton is a clinical nurse manager at Fred Hutchinson Cancer Center in Seattle who was nominated by Heather Smith. While working at an MPN clinic, he provides care to patients with MPN, in addition to providing support in navigating their care.
As he works with doctors and other members of the care team, Buxton has likened his role to that of an admiral.
“I kind of like the analogy of an admiral directing a captain, where the doctor determines the course, the treatment and the dosages. But it’s up to me to figure out how to get that there,” Buxton said. “I am on the phone with the patient two to three days after their doctor’s appointment to break down the complicated science behind hematologic cancer in ways that they can understand.”
In addition to guiding the care team, he also provides an open environment for patients to discuss their symptoms.
“You need them to be very honest with you with what their symptoms are,” Buxton said. “Having that relationship of trust, forming those bonds with the patients, giving them that encouragement to help empower them and to kind of endorse that power and boost it up and support it as much as we’re able to, it’s kind of a really cool thing.”
Forming Bonds Through Clinical Trials
Nominated by Dr. Naveen Pemmaraju, Nichole Ard helps patients with MPN not only navigate clinical trials, but also helps the researchers conduct them efficiently and effectively. The senior clinical studies coordinator at The University of Texas MD Anderson Cancer Center in Houston was motivated to enter the medical field started after her mother was treated for cholangiocarcinoma in 2009 at the institution that she now works at for.
She also aims to connect with patients on a personal level while they participate in these clinical trials.
“Some of my patients I’ve formed really close bonds with,” she recalled. “We share pictures of our children and grandchildren. … They’ll call me up, and want to have lunch and chat just to see how we’re doing and see how I’m doing. So I really feel like that is the biggest reward for me. It’s nice to know that your patients see you, your physicians see you, your team members see you and they appreciate all the work that you put in. And I couldn’t be more happy to represent them.”
Living Life as an Example
Marilyn Kay Edwards is a patient advocate and works as an MPN Peer with the Voices of MPN CHAMPN program. She has used her own experience with MPN – essential thrombocythemia then myelofibrosis – to help other patients who may have recently received their own diagnosis. Edwards, who was nominated by Mary Davis, aims to give patients what she wished was available when she was first diagnosed in 1986.
“When somebody’s newly diagnosed, I don’t tell them it’s going to be fine, because I don’t know what their journey is going to be like,” Edwards said. “Theirs can be very different than mine. But I do try to point people in directions of reputable information.”
Edwards credits the community around her and the advancements in treatment options in MPN for allowing her to still maintain her quality of life, which includes traveling with her husband, Jack.
“And my philosophy is myelofibrosis hasn’t been easy, but I haven’t let it stop me from what we want to do,” she added. “I want to live my life being an example for other people. Be an advocate to help other people. I’m hoping somebody remembers at some point that, you know, I was there and I helped them. And maybe they’ll be able to help somebody else.”
What’s Important in Life
Ed Bartholemy has been a caregiver to his wife, Nancy, who has had myelofibrosis for 40 years, a diagnosis she received before they started dating. Nominated by Kapila Viges, Ed is also a member of the MPN Research Foundation Board of Directors.
Although becoming a caregiver to his wife did take some sacrifice, he recognized that it was an easy decision to make along the way.
“At that stage, I became more of a caretaker and it probably took another 10 years before it really reached a point where it was harder for her to take care of herself,” Ed recalled. “At that point, I quit working full time to care for her. But that wasn’t a difficult decision for me because she was what was most important in my life.”
Nancy underwent a stem cell transplant in 2021 and has since been in remission, an accomplishment they both remember often.
“Now, Nancy has been 100% donor for 12 months, and she is cancer free. It’s great,” Ed said. “We’re both so excited. We say to each other many times every day, ‘Hey, you don’t have myelofibrosis anymore.’”
A Rewarding Relationship With Patients
Nominated by Frank Fabris, Dr. Marina Kremyanskaya has dedicated her career to helping patients with MPNs. The assistant professor of medicine and medical oncology at the Mount Sinai Icahn School of Medicine in New York educates patients with MPNs about their diagnosis, treatment options and other aspects of the disease, while also training future physicians at her institution. Kremyanskaya also conducts clinical trials to help advance the MPN space.
More importantly, she has been recognized for developing deep relationships with her patients with MPN while navigating them through their care, a trait which she credits her grandmother – who was also a doctor – for instilling in her.
“What I really like about being a doctor is the relationships that I develop with my patients and when they’re doing well,” Kremyanskaya said. “And when we really provided the care for them that they need, it’s really rewarding. Of course, the opposite is also true. Our patients can get very sick. Things don’t always go well. And that’s also really, really hard to deal with. … The most important thing (my grandmother) always taught me is (to) be kind, be kind to people. Everybody deserves to be taken care of.”
Ideas Into Action
Dr. Andrew Schafer has dedicated his career to caring for patients with MPN while advancing the field through research. He is a director of the Richard T. Silver, MD Myeloproliferative Neoplasm Center at New York-Presbyterian Hospital/Weill Cornell Medical Center in New York and member of the board of directors of the MPN Research Foundation. He has previously served on the scientific advisory board for a grant program, where he helped a foundation aware more than $18 million in research funding.
Nominated by Barbara Van Husen, Schafer always keeps patients in mind both in the present and the future, always thinking about what needs to be done to further their care.
“Many of my patients actually tell me about some things that they would like to see happen in the field, and they get, in many cases, translated into actual action,” Schafer said. “And it’s the single most enjoyable and gratifying thing. And the dream is that this will become a very high-profile group of disorders that will no longer be considered an orphan disease.”
Erik Lohrmann, vice president of CURE Media Group, thanked the MPN Heroes for all the work they have done in the space.
“This year’s class is an exceptional representation, comprised of patients, caregivers, advocates, physicians and nurses. Their stories are inspirational, their achievements extraordinary. It’s my pleasure to welcome in the 2023 class of MPN Heroes.”
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