CURE Honors Seven Honorees at MPN Heroes Event

CURE Foundation honored seven MPN Heroes at its 12th annual event, celebrating their contributions to improving the lives of patients with myeloproliferative neoplasms.

CURE® celebrated the extraordinary efforts of seven MPN Heroes® at its 12th annual event, honoring their dedication to improving the lives of patients with myeloproliferative neoplasms (MPNs).

These seven individuals were formally recognized at an in-person ceremony hosted around the 66th American Society of Hematology Annual Meeting in San Diego.

Support for the 2024 MPN Heroes event was provided by Incyte.

The event was hosted by Esther and Andrew Schorr, co-founders of Patient Power. Andrew, a myelofibrosis patient himself since 2011, shared his personal journey with the audience.

“Now, 13 years later, we both continue to live with this diagnosis, regular blood tests, pills and some concern from doctor visit to doctor visit,” Esther said. “But we also live with a great deal of hope, and also gratefulness for the support of this community and the dedication to us of clinical and research people around the world.”

Andrew added, “With continued progress to stay ahead of our journey with an MPN, and maybe yours, we’ll enjoy tonight and look forward to many galas in the future.”

Calm and Reassurance

Kathryn Johnson, clinical program manager for the MPN and leukemia programs at the Icahn School of Medicine at Mount Sinai in New York, was nominated by her colleague for her work in clinical trials in the space. In fact, she works with physicians at Mount Sinai who have been previously honored as MPN Heroes.

Johnson’s nominator noted that throughout the last five years, she has witnessed her dedication to providing care for patients with MPNs, while connecting them to the resources they need and advocating for them with insurance companies.

“Kathryn works with patients undergoing experimental treatments, often a daunting time filled with uncertainty,” her nominator wrote. “Yet, her presence brings an immediate sense of calm and reassurance, helping patients feel that everything will be OK.”

Driving the MPN Field Forward

John Crispino, director of the division of experimental hematology at St. Jude Children’s Research Hospital in Memphis, Tennessee, was recognized at the event for his dedication to the MPN community both through his scientific breakthroughs and his advisory role for the MPN Research Foundation, as his nominator wrote.

Crispino contributed his scientific advice to help the MPN Research Foundation gain knowledge to inform proper research strategic funding, among others. In addition, he helped design the annual MPN Roundtable, a forum for scientists and patients, developed scientific programs and attended meetings to interpret scientific advances relevant to MPNs. All of these efforts were done while Crispino led his own lab.

“His research has advanced the biology of red blood cells and megakaryocytes, and the genetic changes that lead to the transformation of MPNs to acute leukemia,” his nominator wrote. “Dr. Crispino[’s] research has helped pave the way for new therapeutic strategies, giving hope to thousands of MPN patients.”

Tailoring to Patient Needs

Mikaela Dougherty, clinical trial manager at Mount Sinai Ruttenberg Treatment Center in New York, was nominated by a patient who recalled the dedication to improving her symptoms from myelofibrosis while under Dougherty’s care. Her nominator remembers how Dougherty would escort her to her MRI, helped her throughout the entire check-in process and addressing any concerns she had about her disease and treatment.

Dougherty’s contributions to the MPN community expanded as she was promoted to clinical trial manager, as her nominator noted. This opportunity has allowed Dougherty to advance treatment options while providing patients and their families with hope.

“Her compassionate patient care, groundbreaking research and active involvement in the clinical trial I am receiving has been a source of comfort and hope,” the nominator wrote. “Mikaela’s compassion is evident in her commitment to providing personalized treatment plans tailored to my needs.”

Patient-Centric Research

The MPN Research Foundation’s Patient Impact Council was honored at the event for their focus on community-driven advocacy and empowerment. The council is comprised of 13 patients and caregivers, all of whom develop the organization’s research agenda and ensure that the patient perspective is at the forefront of their initiatives.

The council’s effort in driving patient-centric research was also recognized by the nominator, who noted that the council ensured that the research conducted by the organization is aligned with the experiences of patients with MPNs. In addition, the council has created several opportunities for patients and caregivers to connect with each other and provide support through support groups, webinars and educational initiatives.

“Their work has not only enhanced the foundation's impact but also transformed the MPN landscape, giving patients a voice and a platform to drive meaningful change in their own lives and in the lives of others,” the nominator wrote.

Working Towards Better Outcomes

Richard Winneker, a patient advocate for the MPN Research Foundation, was nominated for his vast experience in leading patient-centered research programs and focusing on patients with MPNs. He uses his experience and curiosity about the MPN space to create research and educational programs to help patients with the condition.

His nominator mentioned how his leadership quality, mixed with empathy, allow him to understand patient needs and their urgency, all while tying in the research community.

“He remains focused on what is best for patients in everything we do, from how to best communicate new information to ensuring the research programs have a near-term patient impact and maintaining unbiased integrity as new treatments become available,” his nominator wrote. “Rick goes well above and beyond what he is asked to do, tirelessly working towards better outcomes and quality of life for MPN patients.”

Offering a Listening Ear

Joy Ann Anderson, a patient with essential thrombocythemia for the past 24 years, was nominated by someone who sees how much she puts towards supporting other patients with MPNs. She has provided one-on-one support over the last three years as an Imerman Angel and serves as a liaison for the MPN Research Foundation.

Anderson also manages a private Facebook group for patients with MPNs and authors her own blog on her experiences.

“Joy is always ready to offer a listening ear and support to fellow MPN patients on their journey,” her nominator wrote.

Helping the MPN Community

Ned M. Weinshenker, a patient advocate, was nominated for his efforts to help others with MPNs based on his personal experience with myelofibrosis. His nominator noted how Weinshenker publicly speaks and blogs about his treatment regimens and how to balance them with his day-to-day life.

“Is he helping himself? Yes. But he's in it for the whole community. Always giving,” his nominator wrote. “I know this because I donate to his walks. I know this because I've read his patient blogs. I know this because I'm a social worker who leads an MPN support group that he's a member of.”

Robert M. Goldsmith, Senior Vice President of Corporate Development of MJH Life Sciences, the parent company of CURE Media Group, thanked the MPN Heroes for all the work they have done in the space.

“We truly look forward to bringing this tight-knit community together every year at the ASH Annual Meeting,” he said during the event. “… I really want to thank and congratulate all of our heroes tonight, whether they be awarded, their nominators, and the entire MPN community. We really appreciate all that you’re doing. We love the opportunity to be here to support all of you.”

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