At this year's Annual ASH Meeting & Exposition, eight people were recognized as MPN Heroes, and, new this year, a ninth individual was honored as the program’s first Canadian MPN Champion - all for their commitment to the individual and commitment to the broader MPN community.
Compassion, courage and community were echoed by many who took the stage at the fifth annual MPN Heroes gala.
Surrounded by a sea of fish, beluga whales and whale sharks at the Georgia Aquarium, the MPN Heroes Recognition Program named eight people as MPN Heroes and, new this year, a ninth individual was honored as the program’s first Canadian MPN Champion.
Myeloproliferative neoplasms (MPNs) are a type of blood cancer where the body overproduces one or more types of blood cells. MPNs include myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia.
The event, sponsored by Incyte Corporation and CURE® Media Group, along with eight advocacy organizations, spotlights patients, health care professionals, caregivers, advocates and organizations that have improved the lives of people in the MPN community.
The celebration is held during the annual meeting of the American Society of Hematology, which this year is being hosted from Dec. 9-12 in Atlanta.
‘Become the leaders we want to follow’
Serving as the event’s keynote speaker, former Second Lady of the United States Dr. Jill Biden, who holds a doctorate in education, captivated the crowd of more than 150 people during her heartfelt, personal and, at some points, humorous speech.
Biden was set to be live at the event, but had a flight cancelation due to unexpected snow in Atlanta and other parts of the country. After sitting in the airport for six hours, she was whisked away to CURE®’s studio in New Jersey where she filmed her speech that was then broadcasted to the audience.
“For weeks, I have been really looking forward to joining you all to celebrate our MPN Heroes, and yes, to enjoy a little break from the northern cold. It seems like I was wrong on all accounts,” she joked with the crowd erupting in laughter.
In a more serious moment, she spoke of the power of one person and the difference they can bring to an entire community.
“Our capacity to do what we can with what we’ve got,” said Biden. “To become the leaders that we want to follow. To find the courage together to reach for what seems impossible no matter who we are.”
Biden has been personally touched by cancer having lost both of her parents to the disease, as well as her son, Beau, with former Vice President Joe Biden to brain cancer in 2015. She began her mission to help in the fight against cancer in 1993 when she started the Biden Breast Health Initiative in Delaware, which has helped educate more than 10,000 high school girls about the importance of early detection of breast cancer.
Years later, Jill and Joe Biden continue their fight to end cancer through the Biden Cancer Initiative that has a goal of accelerating progress in cancer prevention, detection, diagnosis, research and care, as well as reducing disparities in outcomes. Additionally, they both serve as the Honorary Co-Chairs for the Global Race for the Cure.
In her most vulnerable moment, Biden spoke candidly about what the public didn’t see as she and Joe Biden were helping to serve our country.
“For over a year I watched my brave, strong, funny, bright, young son fight brain cancer,” she said. “Chemotherapy, operation after operation, weight loss. But I never gave up hope. As a mother, you can’t. I had to be strong for my children and my husband, but most of all for my son, Beau, because in the middle of it all, he was being strong for all of us. So, I kept going, living a double life, teaching classes and continuing my duties as second lady.”
Champions on the MPN community
Mistress of ceremonies Ann Brazeau, chief executive officer (CEO) and founder of MPN Advocacy and Education International, presented the awards to the nine individuals.
“Many of you bring gifts to the MPN community,” she said. “Perhaps, the greatest of these gifts are those one-on-one moments, whether they are patient-to-patient, caregiver-to-caregiver or doctor-to-patient.”
Award recipients were broken down into two categories: commitment to the individual and commitment to the broader MPN community. Before they accepted their awards, the audience watched videos in which the honorees discussed their work.
To start, Brazeau presented awards to the recipients committed to the individuals amongst the MPN community.
Barbara Abernathy, Ph.D., is a licensed mental health counselor who serves as CEO of the Pediatric Oncology Support Team, Inc., in West Palm Beach, Florida. She is also a survivor of MPN. Abernathy was diagnosed more than 20 years ago with PV and then MF, which transitioned to acute myeloid leukemia. She underwent a stem cell transplant in 2013. Abernathy has dedicated her life to being a voice for patients with MPN, as well as a support system for families who have a child fighting cancer.
“My entire life was shaped by my diagnosis,” said Abernathy. “If I was only going to be here for a short time, I needed to leave my mark. I needed to make a difference. My legacy is I am here. I do matter. And I get to offer that to other people.”
Mark Heaney, M.D., Ph.D., of the Herbert Irving Comprehensive Cancer Center in New York City, is an iconic figure in the field of MPNs. He is a leader in research, having been involved in more than 20 clinical trials, and in improving the lives of patients who turn to him for treatment when they stop responding to other therapies. His message for patients: You are not alone.
“Sometimes cancer is an alarming term, but I think that it helps them to understand that it’s a disease that is generally permanent and it requires real medical care,” he said. “After reassuring them that these are treatable, they generally tend to participate more in their disease.”
Understanding the language of cancer is one of the largest hurdles patients face after being diagnosed with the disease. But Susan Leclair, Ph.D., of the University of Massachusetts, Dartmouth, makes it comprehensible so patients know their diagnosis and the significance of their lab reports.
“The things that I say are very practical. Bring somebody with you, have a tape recorder,” said Leclair. “’I don’t know what to say to my physician’. Well, here are the questions that you should ask. This is the kind of language that people understand and then they get to be a really good patient.”
Lindsey M. Lyle, M.S., creates a one-on-one connection with her patients that puts them at ease, wrote her nominator Evelyn Schwandt, who has MF and stage 3 ovarian cancer. The certified physician assistant at the University of Colorado Hospital in Aurora is passionate about educating patients and other health care professionals about MPNs.
“We need to keep going in a field that is difficult because at the end of the day I have spent so much time getting to know somebody in a very vulnerable and scary time for them,” said Lyle.
The next four recipients were honored for efforts that have had a significant impact on the broader MPN community.
Gabriela Hobbs, M.D., of Massachusetts General Hospital in Boston, said she will leave “no stone unturned.” Dedicated to helping patients, she has worked collaboratively with hematopathologists and lab-based MPN researchers to help translate clinical observations. Her current project is working to build a panel of patients to help focus on the unique symptoms of patients with MPNs.
“I really enjoy being not only a part of a community that is making new discoveries, but also being able to talk to my patients about this, give them hope and have them understand that although they have this disease, we understand it now much more than we did before,” she said.
Catriona Jamieson, M.D., Ph.D., empowers her patients to get the best care, said Andrew Schorr, who nominated her for the honor. At the University of California, San Diego, Jamieson and her team have translated their cancer stem-cell research into clinical trials aimed at developing new diagnostic and treatment regimens for MPNs and other blood cancers.
“I really think knowledge is power,” she said. “And, we can really perpetuate the power for patients of having this knowledge at their fingertips.”
In August 2014, Julie R. Libon’s life changed forever. The married mother of four from New Jersey was diagnosed with MF. Through her battle with cancer she has found her personal mission: Finding a cure. She and her sister founded Hike MF, which is an annual hiking event that raises funds for MPN research.
“I always say we were just two bumbling sisters, not really knowing what we were doing and it ended up being a great event … I consider myself a person diagnosed with a disease, who decided that I wanted to do something about it,” said Libon.
Carole Brennan Miller, M.D., heads the award-winning cancer research program at Saint Agnes Cancer Center in Baltimore. She has contributed to breakthroughs in MPN research through her involvement in more than 30 clinical trials giving hope to patients.
“Without clinical research, we don’t move further,” said Miller. “It’s a real commitment for the patient, but there’s benefits to clinical trials not just related to medicine, but they have a whole team behind it, which I think is very beneficial to patients.”
The final recipient, Vikas Gupta, M.D., FRCP, FRCPath, was named a Canadian MPN Champion. Gupta, of the Princess Margaret Cancer Centre in Toronto, Canada, not only works in clinic seeing patients and conducting research, but also is the founding member and president of the Canadian MPN Group.
“I’m passionate about developing new models of care of patients with MPN and about training the future leaders in hematology … I’m humbled and honored. I’m not a hero. My team has turned a simple idea into a reality,” said Gupta.
The celebration was made possible with support from Incyte Corporation, a Delaware-based biopharmaceutical company focused on oncology. Also supporting the event were the Canadian MPN Network, CancerCare, Cancer Support Community, the Leukemia & Lymphoma Society, MPN Advocacy & Education International, the MPN Education Foundation, the MPN Research Foundation and the National Organization for Rare Disorders.
“This is a tight-knit community of people that give and give selflessly,” said Marty Murphy, CURE®’s director of patient education. “The MPN community always wants to help a fellow patient or caregiver, and they do nothing but inspire and create hope.”