Recognizing the Champions Among Us

CURE® MPN Heroes®

Heroes Category: Commitment to the Individual
Diane Blackstock
Patient Advocate
Nominator: David Denny
Diane is a pro-active “people person” who was nominated as an MPN Hero in the Commitment to the Individual category. Diane created the Myelofibrosis Private Support Group, which serves about 1,000 patients and caregivers on five continents. Diane is a source of comfort as she guides newly diagnosed patients to current resources on treatment, clinical trials, new studies, and MPN experts in various countries. Diane has also assumed the role of chief administrator of the Myelofibrosis Private Support Group, which has expanded its focus to welcome people with other MPNs.
Timothy Leslie
Nominator: Patti Leslie
Tim is honored as an MPN Hero in the Commitment to the Individual category. As his wife’s MPN worsened over the years, Tim rose to every challenge—both as a personal caregiver and as keeper of the household. When their insurance denied requests for medical equipment, Tim found creative solutions to purchase any and all medical equipment his wife needed. Tim’s courage and strength are not lost on the other caregivers they have met over the years. He’s an inspiration whose consistent caring, patience, and support for his wife makes him not only her MPN Hero, but ours as well.
Susan Lowden
Nominator: Rebecca Claassen
Sue’s nomination is in the Commitment to the Individual category for her selfless devotion to her husband, Bob, in his struggle with MPNs. A nurse for more than 40 years, Sue was a continual source of inspiration at the clinic where Bob received care. Through her demeanor and patience as Bob’s advocate, Sue encouraged the staff to improve supportive care, provide better education about MPNs, and find new therapies to help manage daily challenges. As a result, Sue’s efforts had a dramatic impact on the care and culture of MPNs for every MPN patient at the facility.
Kathleen P. Vogt
Nominator: Gary Vogt
Kathleen was nominated as an MPN Hero in the Commitment to the Individual category while caring for her husband Gary after debilitating medical episodes associated with his myelofibrosis (MF). To help Gary manage the challenges of MF every day, Kathleen expanded her caretaking by handling insurance, billing, medical, and financial issues. Kathleen also took the lead in raising funds for research by organizing team “Myelofibrosis Vogt” for the Leukemia & Lymphoma Society’s Light the Night® Walk. She and Gary consider MF another challenge they will conquer together while also educating their community about MPNs.
Heroes Category: Commitment to the Broader MPN Community
David E. Alexander
Patient Advocate
Nominator: Ron Kruszewski:
David was nominated as an MPN Hero in the Commitment to the Broader MPN Community. An environmental lawyer and marathon runner, David believes in “the magic of every day.” He is a moderator of MPN-NET whose prodigious postings of technical hematology material bring current scientific knowledge to the MPN community. By sharing the latest scientific findings, David’s goal is to help patients be aware about treatment advances, clinical studies, the nature of risk, and how to use risk to maintain a balanced life with MPNs.
Antje W. Hjerpe
Patient Advocate
Nominator: Ann Brazeau
Antje was nominated as an MPN Hero in the category of Commitment to the Broader MPN Community. She joined the MPN-NET listserv in 1999 and started an MPN-NET chapter in Carlsbad, California, in 2003. Seeing the growing need for additional MPN awareness among patients and healthcare professionals, Antje became the Director of a linked MPN Education Foundation branch founded to hold patient educational conferences. At the same time, Antje accepted an invitation to become a list owner of MPN-NET, a daily education and support forum which serves 3,200 members worldwide and is available to patients and caregivers 365 days a year. Antje still finds the time to organize four or five local events a year to extend the sense of community to more people with MPNs.
Zhenya Senyak
Patient Advocate
Nominator: Barbara Van Husen
A science writer with “well-disciplined skills,” Zhenya was nominated as an MPN Hero for his Commitment to the Broader MPN Community. Zhenya publishes the online magazine MPNforum as well as a quarterly journal of rigorously fact-checked scientific articles. Zhenya has also created a list of 150+ patient-recommended MPN clinicians, each identified by geographic location. Through the Zebra Coalition, Zhenya rallied the MPN community to seek a voice in MPN clinical trials. He also organized the Fatigue Project, which sought to end fatigue in MPNs. For these and other reasons, we honor Zhenya in his role as crusader for “this battle, these friends,” and because his impact
Richard T. Silver, MD
Weill Cornell Medical College-New York Presbyterian Hospital
Nominator: Zhenya Senyak
Dr. Silver is Professor of Medicine and Director Emeritus of the Richard T. Silver, M.D., Myeloproliferative Neoplasm Center in New York City. He is also Attending Physician at New York Presbyterian Hospital and Medical Director, The Cancer Research and Treatment Fund, Inc. Dr. Silver was nominated as an MPN Hero for Commitment to the Broader MPN Community. Dr. Silver has written four books and more than 275 peer-reviewed articles, has been the Principal Investigator in multiple clinical trials, sponsored bi-annual patient-hematologist seminars, is the co-inventor of the BMB biopsy technique, and was instrumental in founding the MPN Center for Research and Therapy. In recognition of his work, patients and colleagues established The Richard T. Silver Distinguished Professor of Hematology/Oncology Chair and Visiting Professorship in the Department of Medicine.
Honorary Distinction
Joyce Niblack
Patient Advocate
Joyce receives a posthumous honorary distinction in the category of Commitment to the Broader MPN Community. It was Joyce’s fierce commitment to her MPN family that set the standard for patients taking an active role in their own care. As founder of MPN-NET support group, Joyce’s involvement in the MPN community was prolific. She co-authored scientific papers, raised funds, started foundations, organized conferences, and more. She did it all while striving to alleviate MPN patient suffering, a subject she knew a lot about. For her prodigious efforts, Joyce’s legacy will continue to be honored by the MPN community.

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