CURE®’s ninth annual MPN Heroes Program recognized the heroes who go above and beyond to support patients with the disease.
Six medical professionals, an advocate and a caregiver were honored during the ninth annual CURE® MPN Heroes recognition program, which honors the people who have made valiant contributions in the field of myeloproliferative neoplasms (MPNs) or in the lives of those affected by the disease.
Kerry Fraser, retired National Hockey League (NHL) referee and patient with an MPN, was the event host and emcee for the virtual celebration, held on Dec. 8. Despite facing many angry hockey fans throughout his 30-year career, he noted that the scariest and toughest thing he ever had to face was when he was diagnosed with an MPN in November 2017.
“Once I digested the information that I had an MPN in the leukemia family, my athletic attitude took over. Since I was informed that there was no cure for this blood cancer I had, I looked directly in the eye of my hematologist and told him that he was now the captain of my team. I needed him to assemble all-star players to manage my MPN, and he did just that.”
Three years later, his blood level numbers are now in control and within an acceptable normal range. He noted that when his diagnosis became public, he received a phone call from retired NHL center Mark Messier with important advice.
“His advice to me was ‘never give up fighting,’” Fraser said. “So tonight, I share the captain’s message with you here: Never give up fighting. I’m grateful and humbled to be with you all tonight.”
‘Be More in This Now Moment’
During the ceremony, Fraser was joined by keynote speaker LeVar Burton, actor, director and advocate for children’s literacy. He’s recently become an advocate for MPNs in conjunction with Incyte to highlight the importance of health screening and health care, especially during the COVID-19 pandemic. Burton has taken his lifelong role of being a storyteller to inspire others with MPNs to share their stories and connect with others. Throughout his discussion with Fraser, Burton had some advice for patients with MPNs, although he didn’t feel that it was his place to do so.
“I don't know that I have the right to give advice to people who are really living out their lives in a heroic manner by necessity,” Burton said. “When we have to figure stuff out, we're pretty ingenious mammals. We figure it out. My only piece of advice or encouragement might be to — and again, it sounds silly coming from me — (enjoy) every moment as best as we are able. I think (this) is advice that we could all take advantage of. Be more in this now moment before we move on to the next, and the next, and the next. Just be in this one as long as we can.”
Burton also shared his gratitude for the heroes honored at the virtual ceremony.
“The lives that you lead are a huge demonstration that the MPN that you are working with does not define you,” he said. “However, it has shaped you and your lives in ways that you need to know are hugely inspiring to any and all who are exposed to your stories. And so, I say to you, thank you for simply and naturally doing what it is you do. It's like breathing for you now because you needed to make it that much a part of your life and you do it so effortlessly. You do it so easily, and the inspirational value is really appreciated.”
Education Through Entertainment
Jeff Bushnell is a caregiver to his wife, Summer, who has myelofibrosis and was honored at last year’s CURE® MPN Heroes ceremony. The retired airline pilot and retired Air Force Colonel took his wife’s diagnosis not only as a chance to take care of his wife, but also as an opportunity to learn everything he could about MPNs. This mission led him to become an MPN Network Manager at the Patient Empowerment Network, where he and his wife, who’s also a network manager, advocate for both patients and their caregivers. Using their talents and experience in producing entertainment — especially since they also run a small theater in San Diego — they create videos to highlight empowerment and self care.
“I'm trying to get the word across that it's important to support these folks that have myelofibrosis,” Bushnell said. “You have to listen to your patient. What does that person need? Some need significant physical help. Others just need more reassurance, emotional reassurance. But at the same time, the patient needs to ensure that the caregiver is taken care of and has their time. Summer gives me the time to pursue my photography interests. She understands that I am recharged when I go to these natural places. I never thought of what I was doing as anything other than what needed to be done because I think that if you're involved with somebody that you care about, you should do the best you can to support them.”
Personal Experience to Professional Experience
Dr. Ronald Hoffman, the Albert A. and Vera G. List Professor of Medicine and director of the myeloproliferative disorders research program at Icahn School of Medicine at Mount Sinai in New York, New York, has nearly 30 years of experience investigating areas within this field. He and his team are currently focused on developing new types of immunotherapy for patients with MPNs.
“What I'm all about is basically to advance the cure for patients with myeloproliferative neoplasms, to identify abnormalities in the stem cells that give rise to these myeloproliferative neoplasms and then essentially eliminate or deplete these stem cells so that patients with myeloproliferative neoplasms will live longer.”
Hoffman was at Mount Sinai for his fellowship, where he worked with leaders in polycythemia vera and MPN research, which inspired him to delve into the work he continues today. He was also influenced by his mother’s diagnosis with adenocarcinoma of unknown origin, during which his parents could not get a hold of her doctor to learn more information about the disease. He now gives all of his patients his cell phone number so they have instantaneous contact with him.
Comfort Through Anxious Times
Dr. Nicole Kucine, an associate professor of clinical pediatrics at Weill Cornell Medicine and associate attending pediatrician at NewYork-Presbyterian/Weill Cornell Medical Center, advocates for younger patients with MPNs and their families to help them navigate the unknowns with compassion and concern. In addition, she also works with groups like the MPN Research Foundation to develop website content focused on pediatrics.
Kucine tries everything she can to make the patients she sees comfortable with her, which allows her to provide better care.
“I try to not take myself too seriously so that they can be comfortable with me,” she said. “I just try to provide a lot of reassurance. I tell them that my goals are their goals: for them to live their whole life, go to school and work, raise a family and do whatever they want to do. I don't think living with an MPN should limit that. And we can work together to find ways to manage symptoms, support them and reassure them so kids can be kids.”
Although Kucine strives to make children comfortable, she understands that there is anxiety of living with the unknown, such as an MPN. She tries to describe it as a condition they’re going to live with their entire life, and there may be ups and downs along that journey, but she aims to make the good days outnumber the bad days.
‘This Is Where I Belong’
Amy Lane has been an information specialist with the Leukemia and Lymphoma Society since 2016, but her connection to blood cancer started in the 1970s when her brother was diagnosed with acute lymphoblastic leukemia. This allowed her to understand the emotional and financial challenges that often join an MPN diagnosis, and she uses that drive to provide one-on-one assistance to patients and caregivers globally.
“A lot of times underneath their question is a need,” Lane said. “And I want to try to get below the surface and make that connection with them so that they have that trust, that they feel hope and that they'll come back to us so that we can follow them through the journey and help them throughout.”
During the ceremony, Lane mentioned that her brother, whom she dedicated her award to, is currently healthy, married and has three children. She credits her brother with finding her place in life.
“I feel that I am in the right place,” Lane said. “I feel like this is where I belong. Just getting to know the patients, getting to know the MPN community, the leaders in the community, the doctors in the community, it's just been a very special experience and a genuine experience.”
Working for a Cure
Dr. John Mascarenhas, an associate professor of medicine at the Icahn School of Medicine at Mount Sinai and director of the adult leukemia program and of clinical investigator within the Myeloproliferative Disorders Program at Mount Sinai, dedicates hours of his day to create breakthrough research for MPNs and to provide optimal care to his patients.
His interest in MPNs started early in his career when he was doing laboratory research with tumor immunology. Mascarenhas was eventually connected with Hoffman, who is also being honored at the ceremony, and was introduced to the world of clinical investigation. In addition to research, Mascarenhas also sees patients with MPNs, which gives him the opportunity to connect with them and their families, and learn about their fears and concerns. Although this is an awarding aspect of his career, he often carries the weight of his patients, which he says is very difficult. Mascarenhas has tried to balance this for a very important end goal.
“My hope is in the next five to 10 years — and I know that sounds bold, and probably everyone says it — I hope to see a cure,” he said. “We have to keep that in mind and not get discouraged that in 2021, we don't have a cure, but I'm the kind of person that I keep coming back because I always think that in 2022, we're going to be that much closer.”
Empathetic Approach to Care
Physician assistant of hematology and oncology Jessica J. Neely works with Dr. Elliott F. Winton at the Winship Cancer Institute of Emory University, where she helps patients with MPNs overcome obstacles, and provides information about their disease and financial resources. Neely is known throughout her clinic for providing care to each patient as if they’re her own friend or family member.
She and Winton see patients at the clinic around three days a week, during which Lane spends a lot of time with them answering questions and giving details about their disease. Through this communication, Lane develops close relationships with patients, their families and their caregivers, as they often come to the clinic or call her with questions and issues. No matter where she’s in contact with patients and families, she puts them at ease with her sensitive and empathetic nature.
“Trust is the main thing when patients first meet you,” Lane said. “You need them to trust you and let them know that you're there for them. I try to be a lifeline for my patients, just to be there for them and make myself available. Having this disease is very overwhelming.”
Neely credits Winton for introducing her to the MPN field when she started working with him nearly 20 years ago, during which he has been a mentor for her.
Getting Down to Basics
Dr. Josef T. Prchal, a professor in the division of hematology and hematologic malignancies at the University of Utah, researches the science of MPNs to try to understand the molecular basis of blood diseases, their underlying mutations and how they function.
Prchal graduated from medical school in Prague before doing his initial training in Canada, where he worked with two leaders in the field. It’s through these mentors that he learned the importance of basic science discoveries, especially since it can lead to better treatment and better prognosis for patients. He also does advocacy work, attends organizational meetings, reviews grants and was a founding member of the Myeloproliferative Disorders Consortium, which is funded by the National Cancer Institute.
“What my hope to accomplish, in spite of my advancing age, is to try to make new discoveries which are meaningful,” Prchal said. “Our diagnosing is much more accurate than it was before, but I think we still do not understand the mechanism of the major cause of morbidity or mortality. We know these are caused by new mutations, but we still don't have any ability to try to control or prevent it. So I think that needs to be done. It gives me a drive to work on the weekend and work at night and it's very gratifying, especially if some of the successes can transfer to the clinics.”
Maintaining Positivity Throughout the Journey
Dr. Anita Rajasekhar, a hematologist/oncologist and an associate professor at University of Florida in Gainesville, practices on the belief that hematology is a puzzle and that each patient has a unique story, which she learned from two of her mentors early on in her career. When Rajasekhar sees patients in the clinic, she understands that they are not expecting to hear that they have a blood cancer, so she takes the time needed for the patient to understand the diagnosis and ask questions.
“It's really important for a patient and their doctor to have a very close relationship,” Rajasekhar said. “It's one of the most sacred relationships we have in medicine. The patient needs to be able to trust the physician, that the physician will be there for them no matter what. I just always make sure that the patient knows that I'm a partner in this journey that they are taking in medicine.”
Throughout that journey, Rajasekhar also tries to fill her patients with hope by showing them the new research happening in the field. She believes that through this education, patients can participate in shared decision making, which can potentially improve outcomes.
Even though specializing in this area can come with its ups and downs, Rajasekhar tries to maintain a positive attitude, especially since she can bring some joy and comfort to patients throughout their journey.
“It's really important to keep patients positive through this long journey,” she said. “For some patients, that journey can be many years, and for others, it's not that long, but it's my job as their physician to give them hope. That's why I went into medicine.”
Contributions to the MPN Field
Erik Lohrmann, vice president of CURE Media Group, acknowledged the heroes and others who attended the virtual ceremony.
“Whether through research and development, patient advocacy or patient care, you've each uniquely contributed to improving the lives of MPN patients,” Lohrmann said. “Your accomplishments and tireless devotion exemplify what our heroes award represents, so thank you.”
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