MPN Heroes
Honoring Those Who Have Made Our World A Better Place

CURE® magazine is proud to host an annual evening of gratitude and celebration for the heroes that are making differences in the lives of people with myeloproliferative neoplasms (MPNs).

Each MPN Hero is nominated by patients and caregivers for their heroic contributions in the field of MPNs or in the individual lives of people with MPNs.

Read about this year’s event and explore the tabs at the top of this page to learn more.

For more information on MPN awareness, please also see www.voicesofmpn.com. 
 

  • highlights
  • Meet the 2016 Heroes.
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    Siddhartha Mukherjee

    Siddhartha Mukherjee’s accomplishments as both a physician and author are compelling and powerful. Winning a Pultizer Prize for his book, Emperor of All Maladies, Dr. Mukherjee’s newest book is The Gene: An Intimate History, #1 New York Times Bestseller.

    Dr. Mukherjee’s new book The Gene: An Intimate History, debuted at #1 on the New York Times bestseller list. It is a magnificent history of the gene and a response to the defining question of the future: What becomes of being human when we learn to "read" and "write" our own genetic information?

    A cancer specialist, Sid has devoted his life to caring for victims of cancer, a disease that sickens and kills millions of people around the world each year. As a researcher, his laboratory is on the forefront of discovering new cancer drugs using innovative biological methods.

    Dr. Mukherjee is equally devoted to and effective in communicating the ‘;story’ of cancer through his writings.

    In his engrossing book, The Emperor of All Maladies: A Biography of Cancer, Dr. Mukherjee gives readers a fascinating look into the origins and causes of cancer, its deadly effect on the human body, how it has virtually enveloped modern civilization, and the epic battles that are taking place to control, cure, and conquer it.

    As he notes, the disease now touches in some way the lives of every man, woman and child in the world, while scientists and physicians work tirelessly to bring new treatments and hope to it s victims.

    Dr. Mukherjee has been published in Nature, ,New England Journal of Medicine, Neuron, Journal of Clinical Investigation, The New York Times and The New Republic. His work was nominated for inclusion in Best American Science Writing, 2000.

    Sid is an accomplished speaker. His words both on the stage and on the page are powerful, illuminating, and inspiring.

    2015 3rd Annual MPN Heroes™ Recognition Gala Special Guest Speaker

    Dr. Jennifer Arnold, co-star of “The Little Couple” and a neonatologist at Texas Children’s Hospital, will be the guest speaker at CURE® magazine’s 3rd Annual MPN Heroes™ recognition event on Friday, Dec. 4, prior to the annual meeting of hematologists.

    Dr. Arnold stands at just 3 foot 2 inches and has a rare type of dwarfism called Spondyloepiphyseal Dysplasia Type Strudwick, for which she has undergone more than 30 surgeries. TLC's docudrama, “The Little Couple,” follows the personal and professional lives of Dr. Arnold, her husband Bill and their two children, Will and Zoey. Dr. Arnold also has been involved in healthcare simulation education for the last eight years and is now the medical director of a state-of-the-art simulation center at Texas Children’s Hospital, where she is a practicing physician at the largest NICU in the country.

    In December 2013, Dr. Arnold revealed she had cancer, a rare type of cancer stemming from an abnormal pregnancy: gestational trophoblastic neoplasm.  She underwent surgery in addition to chemotherapy for 3 months before going into remission. Dr. Arnold will share her experiences and talk about the importance of a supportive community for those afflicted with a rare disease. She, like the people with MPNs, understands the loneliness of having a rare disease, with few like people to talk with and limited treatment options.

     

    2014 2nd Annual MPN Heroes™ Recognition Gala Special Guest Speaker

    At the 2014 MPN Heroes Recognition Gala, CURE was pleased to have actor and advocate Chip Esten as the event's special guest speaker.

    Chip Esten


    Born in Pittsburgh, PA, Charles "Chip" Esten was raised in Alexandria, VA and attended T.C. Williams High School (made famous in the film “Remember the Titans.”) He then attended The College of William and Mary in Williamsburg, where he graduated with a degree in economics and met his eventual wife, Patty. While in Williamsburg, he was lead singer/songwriter in a popular local band.

    Esten made his theatrical debut in London when he portrayed Buddy Holly, singing, acting and playing guitar in the hit West End musical “Buddy.” In that role he was honored to perform for H.R.M Queen Elizabeth and Prince Philip, and eventually President and Mrs. George H.W. Bush at The White House. He was also very honored to perform with Jerry Allison and Joe B. Mauldin, Buddy’s original hitmaking bandmates, the Crickets.

    It was during his run as Buddy that Esten first appeared on the original British version of “Whose Line Is It Anyway?,” with Ryan Stiles and Greg Proops. When “Whose Line” came to ABC, he became a recurring cast member and frequent song improvisor. Since then he has appeared on Drew Carey’s Improvaganza and toured frequently, performing live improv shows with Stiles, Proops and Jeff B. Davis.

    Esten’s many additional television credits include recurring roles on “Big Love,” “Enlightened,” “The Office” and “ER.” Besides being the father on Disney Channel’s “Jessie,” he has been a Klingon on “Star Trek: The Next Generation,” a secretary on “Murphy Brown” and Kelly Bundy’s fiance on the series finale of “Married with Children.” His film credits include “Swing Vote,” “Thirteen Days,” “61*” and “The Postman.”

    While on "Nashville”, Esten has been honored to perform at the Grand Ole Opry and the historic Ryman auditorium. He was also honored to officially "flip the switch" at the 2013 Graceland Christmas Lighting ceremony. Many of the songs he has performed as Deacon (Undermine, Sideshow, Playin' Tricks, etc..) are available on the three very successful "Nashville" soundtracks that have been released to date.

    Over a decade ago, Esten’s life was turned upside down when his then 2 1/2-year-old daughter, Addie, was diagnosed with acute lymphoblastic leukemia, a cancer that affects the body's white blood cells. The disease, which is generally highly treatable in children, was detected after Esten and his wife, Patty brought Addie to the pediatrician for a small rash of red spots. Addie underwent weekly spinal taps and a grueling two-year course of chemotherapy. She also participated in several clinical trials, which rendered her unable to walk for six months and forced her into intensive care. With his daughter now 14 and in remission Esten and his family have dedicated themselves to helping other families of sick children with blood cancers.

    Click here to hear more from Esten as he recounts his daughter's cancer diagnosis and recovery at the Leukemia and Lymphoma Society's Light The Night Walk kick-off lunch.

     

    Thank you for your interest in MPN Heroes. We are extremely honored to recognize the champions of MPN. This year, we received an overwhelming response and have had to close registration. Please check back next year!

    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
    Caregiver
    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
    Caregiver
    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
    Caregiver
    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.
     
     
     

     

     
    CURE® Magazine Hosts 4th Annual Gala Honoring MPN Heroes®
     
    Celebration recognizes patient advocates, clinicians, researchers and caregivers for their dedication to improving the lives of people with rare blood cancers.
     
    SAN DIEGO, CALIF. (PRWEB) DECEMBER 02, 2016

    On Dec. 2, 2016, CURE® magazine will host the 4th Annual MPN Heroes® Recognition Event at the Hard Rock Hotel San Diego honoring the 2016 MPN Heroes—eight individuals who have made a difference in the field of rare blood cancers known as myeloproliferative neoplasms (MPNs) by going above and beyond the standard of care, demonstrating leadership within the MPN community and/or a commitment to individual patients.

    This year’s event, being held prior to the 58th American Society of Hematology Annual Meeting, will recognize Ross Levine, MD; Elliott Winton, MD; Erin Blackwell, RN, BSN, OCN; Bonnie Blankert; David Wallace; Ann Brazeau; Andrew Schorr; and Patricia Koenig. Joining the honorees as keynote speaker is cancer researcher and Pulitzer Prize-winning writer Siddhartha Mukherjee, MD, PhD.

    “We celebrate these real-life heroes who work every day helping patients and families. Honoring these outstanding caregivers and advocates reflects our dedication to the cancer community,” said CURE Media Group President Michael J. Hennessy, Jr.

    The MPN Heroes® Recognition Event is made possible with support from Incyte Corporation, 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. A steering committee of patients, advocates and health care professionals selected honorees from among the scores of people and groups nominated by the MPN community. This year’s award recipients include two physicians, a nurse, a caregiver and four patient advocates. Of these, four awards are going to individuals in the category “Commitment to the Individual”: 

    • Ross Levine, MD—Dr. Levine has had an enormous impact on MPN research. His many innovative contributions include the co-discovery of a key gene mutation, being the development lead in important clinical research and development of drug treatment approaches to clinical trials for MPNs.
    • Elliott Winton, MD—Dr. Winton is a distinguished researcher who conducted the first bone marrow transplant at Emory University Hospital in 1979. In addition to advancing the science of MPNs through continuous research, he’s an esteemed physician who spends endless hours talking with patients at Cancer Support Community, national MPN organizations and local MPN support groups.
    • Erin Blackwell, RN, BSN, OCN—Erin is renowned for her compassion and exceptional dedication to her MPN patients at the Levine Cancer Institute. She excels at personalized patient care, can recall details about most of her patients and gets back in touch with patients—even during her off-hours.
    • Bonnie Blankert, Caregiver—Bonnie left her home and family for 2 months to care for a friend who needed stem cell transplant surgery due to complications of post-essential thrombocythemia myelofibrosis. Without a designated caretaker, her friend would not have been eligible to have the transplant surgery.

     

    The second category of recipients includes individuals whose continuous efforts have had a significant impact on the broader MPN community: 

    • David Wallace, Patient Advocate—David publishes PV Reporter and MPN Cancer Connection, informative websites for patients with MPNs. Diagnosed with polycythemia vera (PV), David is devoted to helping other patients get information and resources to help them live with their MPNs.
    • Andrew Schorr, Patient Advocate—Andrew’s experiences with chronic lymphocytic leukemia and myelofibrosis inspired him to found Patient Power and Patient Empowerment Network, well‐regarded online portals offering authoritative cancer information. Andrew travels widely to interview top MPN experts and also reaches out to patients in MPN support groups, offering knowledge to help them become more empowered and informed.
    • Ann Brazeau, Patient Advocate—Ann is the founder and CEO of MPN Advocacy & Education International. Her devotion to grassroots education and services for the MPN community has made her a legendary patient advocate—especially for underserved populations.
    • Patricia Koenig, Patient Advocate—Patricia’s cheerfulness and inner strength encourage others who live with PV. Patients may be searching for hope after they are diagnosed with PV, and they find it when they meet Patricia and hear her story of courage.

     

    In an effort to honor the four Heroes recognized for their impact on the broader MPN community and further increase awareness, Incyte will make a $25,000 charitable donation per recipient to an organization engaged in MPN activities.

    Keynote speaker Siddhartha Mukherjee, MD, PhD, will join the hundreds of guests honoring the 2016 MPN Heroes® and share new insights into the causes and cures of cancer. A graduate of Stanford University, Harvard Medical School and Oxford University, Dr. Mukherjee is a cancer specialist whose laboratory is at the forefront of discovering new cancer drugs using innovative biological methods. In his Pulitzer Prize-winning book, The Emperor of All Maladies: A Biography of Cancer, Dr. Mukherjee explores the origins and causes of cancer, its deadly effect on the human body, how it has virtually enveloped modern civilization, and the epic battles that are taking place to control, cure, and conquer it.

    “Incyte Corporation is pleased to once again partner with CURE® magazine to sponsor the MPN Heroes Program,” said Hervé Hoppenot, CEO of Incyte. “Our goal with this program is to create as many opportunities as possible for people with MPNs to continually be heard and supported.”

    Visit http://www.MPNHeroes.com to learn more about this year’s MPN Heroes®, the 2016 Recognition Program Rules and Steering Committee members. Individuals or entities supported through funding or directed by Incyte are not eligible for consideration or recognition.

    Supporting the recognition of MPN Heroes® and the MPN community is an ongoing effort of Incyte’s Voices of MPN awareness program. For every post made on The Wall of Voices, Incyte will donate $5 to the MPN Research Foundation. For more information, visithttp://www.voicesofmpn.com.

    About CURE Media Group 
    CURE Media Group is the leading resource for cancer updates, research and education. It combines a full suite of media products, including its industry leading website, CUREtoday.com; innovative video programs, such as CURE Connections®; a series of widely attended live events; and CURE® magazine, which reaches over 1 million readers. CURE Media Group is part of the Plainsboro, N.J.-based Michael J. Hennessy Associates, Inc. family of businesses, which includes the acclaimed OncLive® (http://www.onclive.com) platform of resources for the practicing oncologist. For more information, visit http://www.curetoday.com or http://www.mjhassoc.com/.

    About Incyte 
    Incyte Corporation is a Wilmington, Del. -based biopharmaceutical company focused on the discovery, development and commercialization of proprietary therapeutics. For additional information on Incyte, please visit the company’s website athttp://www.incyte.com.

    Follow @Incyte on Twitter at https://twitter.com/Incyte.

    To read related articles, please click below links.

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    Lenexa woman honored for advocacy in fighting rare blood cancers

    Local man honored at MPN Heroes Recognition Event

     

    CURE® MAGAZINE TO HOST RECOGNITION GALA FOR HEROES IN RARE BLOOD CANCER COMMUNITY ON DECEMBER 2

    Pulitzer prize-winning oncologist Siddhartha Mukherjee M.D., Ph.D., to keynote fourth annual MPN Heroes™ celebration event in San Diego

    PLAINSBORO, N.J., and WILMINGTON, Del. (October 6, 2016CURE® magazine is proud to announce the 2016 MPN Heroes™ celebration will take place on Friday, December 2, prior to the American Society of Hematology’s (ASH) Annual Meeting in San Diego, Calif., featuring Pulitzer Prize-winning science writer Siddhartha Mukherjee M.D., Ph.D., author of current bestseller The Gene: An Intimate History, as the keynote speaker.

     

    The gala event at the Hard Rock Hotel San Diego will honor the 2016 MPN Heroes™ - individuals who have made significant contributions in the field of rare blood cancers known as myeloproliferative neoplasms (MPNs). The MPN Heroes™ - selected from hundreds of nominated clinicians, caregivers and advocates-were put forward by patients and caregivers for their contributions in the field of MPNs or in the individual lives of people with MPNs. Honorees include patient advocates, clinicians, communicators and research catalysts who provide support and care for those with MPNs, as well as research into new treatments-in many cases while their own lives are threatened by the conditions.

    As the keynote speaker, Dr. Mukherjee, a graduate of Stanford University, Harvard Medical School and Oxford University, will share new insights into the causes and treatments of cancer with attendees.

    “We are privileged to have Dr. Mukherjee join us as we honor outstanding caregivers and advocates who go above and beyond when caring for people with MPNs, along with leaders and researchers advancing the MPN community and the science of these rare blood cancers," said Mike Hennessy Jr., president of CURE® Media Group. “Hosting this event allows us to recognize this year’s MPN Heroes™ and also showcase everything our company and CURE® magazine support.”

    A cancer specialist, Dr. Mukherjee has devoted his life to caring for patients with cancer. His laboratory is on the forefront of discovering new cancer drugs by using innovative biological methods. Dr. Mukherjee is equally devoted to effectively communicating the “story” of cancer through his writings. In his Pulitzer Prize-winning book, The Emperor of All Maladies: A Biography of Cancer, Dr. Mukherjee looks into the origins and causes of cancer, its deadly effect on the human body, how it has virtually enveloped modern civilization, and the epic battles that are taking place to control and conquer it.

    The gala honoring the 2016 MPN Heroes™ is made possible with support from Incyte Corporation, a Delaware-based biopharmaceutical company.

    “The MPN Heroes™ are an inspiration to the community-setting a high bar through the incredible work, dedication and service they carry out on behalf of those affected by MPNs. We are grateful to be part of this program, working together with CURE® to increase awareness and visibility for the community and support people living with MPNs,” said chief executive officer Hervé Hoppenot of Incyte.

    The event will take place during the 58th ASH Annual Meeting and Exposition (http://www.hematology.org/Annual-Meeting), the world’s premier event in malignant and nonmalignant hematology. The meeting provides an invaluable educational experience and an opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in hematology. Attendees can network with top minds in the field, as well as a global community of more than 20,000 hematology professionals from every subspecialty.

    About CURE® Media Group
    CURE® Media Group’s flagship product, CURE® magazine, is the indispensable guide to every stage of the cancer experience. With nearly 1 million readers, CURE® is the largest consumer publication in the United States focused entirely on cancer, with broad distribution to cancer patients, cancer centers and advocacy groups. CURE® Media Group’s offerings also include its online resource, curetoday.com; live meetings; a resource guide for the newly diagnosed; and the Extraordinary Healer™ national nursing award. CURE® Media Group combines science and humanity to make cancer understandable. CURE® Media Group is part of the Plainsboro, N.J.-based Michael J. Hennessy Associates, Inc. family of businesses, which includes the acclaimed OncLive® (www.onclive.com) platform of resources for the practicing oncologist. For more information, visit http://www.curetoday.com or http://www.mjhassoc.com/.

    About Incyte
    Incyte Corporation is a Wilmington, Delaware-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary therapeutics. For additional information on Incyte, please visit the company’s website at www.incyte.com.
    Follow @Incyte on Twitter at https://twitter.com/Incyte.www.incyte.com.

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    Media Contacts
    For CURE®: Becky Taylor, 609-240-6886, becky@btaylorpa.com
    For Incyte: Catalina Loveman, 302-498-6171, cloveman@incyte.com

     

     

     

    DR. JENNIFER ARNOLD OF ‘THE LITTLE COUPLE’ TO KEYNOTE 3RD ANNUAL MPN HEROES CELEBRATION EVENT IN ORLANDO

    CURE® magazine to host conference celebrating heroes in rare blood cancer community on Dec. 4

    PLAINSBORO, N.J. and WILMINGTON, Del. (August 27, 2015) – Dr. Jennifer Arnold, co-star of “The Little Couple” and a neonatologist at Texas Children’s Hospital, will be the guest speaker at CURE® magazine’s 3rd Annual MPN Heroes™ recognition event on Friday, Dec. 4, prior to the annual meeting of hematologists.

    Dr. Arnold will be among hundreds of attendees honoring eight heroes who have made significant contributions in the field of rare blood cancers known as myeloproliferative neoplasms (MPNs) at the event taking place at the Renaissance Orlando at SeaWorld® in Orlando, Fla. The heroes will be selected from hundreds of clinicians, caregivers and advocates nominated by patients and caregivers in the months leading up to the recognition event.

    MPN Heroes is supported by Incyte Corporation, 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 event honors outstanding MPN caregivers and advocates who have gone above and beyond the standard of care for people with MPNs, demonstrating leadership within the MPN community or advancing the science of these rare blood cancers,” said Mike Hennessy Jr., president of Intellisphere Oncology and Healthcare Specialty Group, including CURE Media Group. “Hosting this event allows us to recognize MPN heroes and to showcase everything our company and CURE magazine support. We look forward to welcoming Dr. Arnold as our guest speaker. Not only is she a member of the medical community, she understands the challenges of coping with a rare disease as an individual, as well.”

    Dr. Arnold stands at just 3 foot 2 inches and has a rare type of dwarfism called Spondyloepiphyseal Dysplasia Type Strudwick, for which she has undergone more than 30 surgeries. TLC's docudrama, “The Little Couple,” follows the personal and professional lives of Dr. Arnold, her husband Bill and their two children, Will and Zoey. Dr. Arnold also has been involved in healthcare simulation education for the last eight years and is now the medical director of a state-of-the-art simulation center at Texas Children’s Hospital, where she is a practicing physician at the largest NICU in the country.

    In December 2013, Dr. Arnold revealed she had cancer, a rare type of cancer stemming from an abnormal pregnancy: gestational trophoblastic neoplasm.  She underwent surgery in addition to chemotherapy for 3 months before going into remission. Dr. Arnold will share her experiences and talk about the importance of a supportive community for those afflicted with a rare disease. She, like the people with MPNs, understands the loneliness of having a rare disease, with few like people to talk with and limited treatment options.

    “Raising awareness of rare blood cancers, like MPNs, benefits both patients and their families—inspiring and increasing visibility for the community,” said Hervé Hoppenot, President and Chief Executive Officer of Incyte. “The MPN Heroes program highlights the incredible work and service that individuals bring to those affected by the disease and those dedicated to their care. By recognizing these heroes, we hope to encourage awareness, research and advances for the care and treatment of people living with MPNs.”
    Nominations for the MPN Heroes recognition program are being accepted through September 10. To nominate an MPN hero, visit www.mpnheroes.com or download the MPN Heroes Nomination Form. For questions, email MPNHeroes@kruegerandassociates.com.
    Supporting the recognition of MPN heroes and the MPN community is an ongoing effort of Incyte’s Voices of MPN™ awareness program. For every post made on the Wall of Voices, a site where patients recognize their MPN heroes, Incyte will donate $5 to the MPN Research Foundation. For more information, visit www.voicesofmpn.com.

    About CURE Media Group
    CURE Media Group’s flagship product, CURE magazine, is the indispensable guide to every stage of the cancer experience. With nearly 1 million readers, CURE is the largest consumer publication in the United States focused entirely on cancer, with broad distribution to cancer patients, cancer centers and advocacy groups. CURE Media Group’s offerings also include its online resource, curetoday.com; live meetings; a resource guide for the newly diagnosed; and the Extraordinary Healer™ national nursing award. CURE Media Group combines science and humanity to make cancer understandable. CURE Media Group is part of the Plainsboro, N.J.-based Michael J. Hennessy Associates, Inc. (MJH), family of businesses, which includes the acclaimed OncLive® (www.onclive.com) platform of resources for the practicing oncologist. For more information, visit www.curetoday.com or www.mjhassoc.com.

    About Incyte
    Incyte Corporation is a Wilmington, Del.-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary small molecule drugs, primarily for oncology. For additional information on Incyte, please visit the company's website at www.incyte.com.

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    Media Contacts
    For CURE: Becky Taylor, 609-240-6886, becky@btaylorpa.com
    For Incyte: Catalina Loveman, 302-498-6171, cloveman@incyte.com

     

     

    CURE Magazine and Incyte Honor MPN Heroes

     

     

    Award reception and gala recognize the work and achievements of individuals dedicated to improving the lives of people living with rare blood disorders


    Plainsboro, NJ, and Wilmington, DE – December 5, 2014CURE™ magazine, published by Cure Media Group, hosted the 2nd Annual MPN Heroes celebration reception honoring nine individuals in the field of myeloproliferative neoplasms (MPNs) on December 5th in San Francisco prior to the American Society of Hematology’s annual meeting. The celebratory event honored this unique group of individuals who have made a difference by going above and beyond the standard of care, demonstrating leadership within the MPN community, or advancing the science of MPNs. The celebration was made possible with support from Incyte Corporation, CancerCare, Cancer Support Community, Leukemia & Lymphoma Society, MPN Advocacy & Education InternationalMPN Education Foundation, MPN Research Foundation, and MPN Education Foundation, and National Organization for Rare Disorders.

    “The MPN Heroes event is a great opportunity for us to acknowledge the contributions and efforts of these dedicated clinicians, advocates, and caregivers. We are looking forward to doing more events like this across a number of therapeutic areas,” said Mike Hennessy, Jr., President of Cure Media Group.

    More than 50 nominations were received and a steering committee that included patients, advocates, and healthcare professionals selected recipients in two categories, the first of which was commitment to the individual. The four recipients in this category included a patient/advocate and three caregivers:

    Diane Blackstock, from Hagerstown, MD, and an MPN patient for 37 years, was recognized for running an informative and compassionate myelofibrosis support group on Facebook serving approximately 1,400 patients and caregivers on at least four continents.

    Kathleen Vogt, a caregiver from Troy, NY, was nominated for being ‘the rock’ for her patient while working full time and simultaneously raising money to “out-Vogt (vote) myelofibrosis” by establishing the Light the Night Walk in Albany.

    Susan Lowden, from Blue Springs, MO, a former hospice worker and enthusiastic caregiver for her husband through his 10-year journey with his MPN, was recognized for the inspiration she provided to find better treatment, provide better supportive care, and to educate others about MPNs.

    Timothy Leslie, from Colorado, was nominated for his dedication and unwavering endurance as caretaker for his wife through her illness.

    The second category of recipients included individuals whose continuous efforts have had a significant impact on the broader MPN community: Antje Hjerpe, a Carlsbad, CA-based ET patient and advocate, was nominated for her long-term dedication, stewardship, and volunteer service to the MPN Education Foundation.

    Zhenya Senyak,a myelofibrosis patient, crusader and publisher of MPN Forum, from Ashville, NC, was recognized for his passionate and accomplished work to help patients truly understand their disease, give them a sense of community, and encourage them to mobilize for change.

    David Alexander, from Washington, DC, is an advocate who was nominated for his efforts to help patients keep up with the latest research and publications on MPNs and for his role in the online support group MPN-NET.

    Dr. Richard Silver, who is affiliated with Weill-Cornell Medical Center, New York Presbyterian, was recognized for advancing the science of MPNs, his commitment to the MPN community for more than half a century, and for his role in founding the Richard T. Silver, M.D. Myeloproliferative Neoplasm Center at Weill Cornell.

    "The MPN Heroes event characterizes CURE's commitment to advancing patient care, through the recognition of outstanding caregivers and advocates in the myeloproliferative neoplasms space. This year's honorees come from across the United States and represent a strong commitment to the MPN community and individuals with these rare blood disorders," said Silas Inman, Director of Editorial and Multimedia for the Cure Media Group.

    Separate from the traditional MPN Heroes recognitions, Joyce Niblack, a tireless and extraordinarily effective advocate, received an Honorary Distinction for her efforts in establishing and managing the first online patient community initiative and dedicating the last years of her life to the MPN community. Joyce’s legacy will be remembered throughout the MPN community for helping patients overcome confusion, uncertainty, and fear through community and connection.

    In an effort to further increase awareness in the MPN community, Incyte honored the four Heroes recognized for their impact on the broader MPN community by making a $25,000 charitable donation to an organization engaged in MPN activities on behalf of each Hero.

    “We are inspired and grateful to this year’s MPN Heroes who unselfishly and tenaciously serve the MPN community,” said Hervé Hoppenot, President and Chief Executive Officer, Incyte.

    In addition to honoring these extraordinary individuals, the event featured a stirring talk by special guest speaker Charles Esten, from the TV show "Nashville," discussing his family's cancer journey. Over a decade ago, Esten's daughter was diagnosed with acute lymphoblastic leukemia and is now in remission. Following this experience, Esten has become a honorary spokesperson for cancer education and he and his family have joined the battle to fund the research that will help families who are faced with blood cancers.

    Visit http://www.MPNHeroes.com to learn more about this year’s MPN Heroes and for a list of the steering committee members.

    Supporting the recognition of MPN Heroes and the MPN community is an ongoing effort of Incyte’s Voices of MPN™ awareness program. For every post made on The Wall of Voices, Incyte will donate five dollars to the MPN Research Foundation. For more information, visit http://www.voicesofmpn.com.

    About CURE Media Group
    CURE Media Group, through its unique and award-winning products, has been a source of information and inspiration for patients and families on the cancer journey since 2002. CURE Media Group's flagship product, CURE magazine, is the indispensable guide to every stage of the cancer experience. With nearly 1 million readers, CURE is the largest consumer publication in the United States focused entirely on cancer, with broad distribution to cancer patients, cancer centers, and advocacy groups. Through the magazine, live meetings, a resource guide for the newly diagnosed, the Extraordinary Healersm national nursing award, and other books and online tools, CURE Media Group combines science and humanity to make cancer understandable. CURE Media Group is part of the Michael J. Hennessy Associates, Inc. (MJH) family of businesses, which includes the acclaimed OncLive (www.onclive.com) platform of resources for the practicing oncologist. For more information, visit www.curetoday.com or www.mjhassoc.com.

    About Incyte
    Incyte Corporation is a Wilmington, Delaware-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary small molecule drugs, primarily for oncology. For additional information on Incyte, please visit the Company's website at www.incyte.com.


    Contacts:

    Cure Media Group
    Silas Inman
    Phone: (609) 716-7777, ext. 233
    E-mail: sinman@onclive.com

    Incyte Media Inquiries:
    Mariesa Kemble
    Sam Brown Inc.
    Phone: (608) 850-4745
    E-mail: mariesakemble@sambrown.com

    Nominations are now closed.

    CURE Media Group, publishers of CURE magazine, is proud to be hosting the MPN Heroes Recognition event at this year's annual meeting of hematologists in Orlando, Fla. At this event, CURE will honor individuals and institutions who champion those affected by myeloproliferative neoplasms (MPNs) and have been nominated by their loved ones and peers.

    MPNs are a serious disease that include myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET) and there are many heroes who make a difference in the lives of people living with MPNs. These individuals and institutions can make a difference in a variety of ways— by caring for someone living with a MPN or by taking a stand to ensure that people with MPNs get the help and support they need.

    The MPN Heroes Recognition program, sponsored by Incyte Corporation, is accepting nominations for individuals or institutions that have gone above and beyond on behalf of the MPN community through September 10, 2015. At the close of the contest, eight nominees and the individuals that nominated them will join CURE in Orlando to be honored at the annual MPN Heroes Recognition event!


    Nominate your MPN Hero today!

    Help to promote awareness of MPNs by rewarding the voices and actions of those who have made a difference.

    2 easy steps:

    1. Visit MPNHeroes.com to get additional details

    2. Download the MPN Heroes Nomination Form

    But don’t wait, all nominations must be received by September 10, 2015. Questions? Email MPNHeroes@kruegerandassociates.com.

    Heroes Category: Commitment to the Individual
     
    Rebecca N. Claassen, RN, BSN, OCN
    Nominator: Lauren Wright
     
    Rebecca N. Claassen is an MPN Hero in the category of Commitment to the Individual. Becca has demonstrated outstanding support for patients with MPNs. As a dedicated Unit Educator at the University of Kansas Cancer Center, Becca has brought a greater understanding of MPNs to the nursing staff. Her fervent advocacy and teaching about MPNs has gone beyond mere communication. Her efforts have helped colleagues make a positive impact on the quality of care for patients with MPNs.

    In caring for patients, Becca provides meaningful guidance about financial assistance, clinical trials, and treatment options, and support avenues to help them overcome daily challenges. In short, her tireless advocacy brings MPNs to the forefront for her peers and provides a sense of hope for patients.
     
     
     
     
    David Allen Denny, Patient Advocate
    Nominator: Diane Blackstock
     
    David Allen Denny is an MPN Hero in the category of Commitment to the Individual. He is affiliated with 2 online support groups: the Myelofibrosis Private Support Group and MPNforum.

    David is passionately committed to helping patients with MPNs overcome obstacles. Through daily e-mails and messages of support, he comforts and guides online members to proper medical resources, financial information, current studies, and other educational materials. David not only welcomes people into the MPN community, but he also strives to empower individuals to ensure that their voices and concerns are heard. Because he has selflessly volunteered countless hours, David has helped hundreds of people in the MPN community get the vital information they need to help manage their MPNs.
     
     
     
     
    Jason R. Gotlib, MD
    Nominator: Andrea Linder
     
    Dr. Jason R. Gotlib is an MPN Hero in the category of Commitment to the Individual. He is an Associate Professor of Medicine (Hematology) at the Stanford University Medical Center who is also an international leader in MPN research.

    Recognized for advancing the science of MPNs, Dr. Gotlib is the Principal Investigator for a number of clinical trials in the classic MPNs, and for a database registry specifically for MPN research. In addition, he is acclaimed for his leadership in professional and patient education conferences. Besides mentoring medical fellows and serving as the Editor-in-Chief of The Hematologist, Dr. Gotlib is highly regarded by his patients for his dedication and sincerity—and for providing superb individual patient care.
     
     
     
     
    Chris Holroyde, MD
    Nominator: Robert Romance
     
    Dr. Chris Holroyde is an MPN Hero in the category of Commitment to the Individual. As a specialist in hematology/oncology at the Phoenixville Cancer Center, Dr. Holroyde consistently demonstrates patience and endurance in helping to improve the lives of his patients. With each individual, he balances a thorough explanation of the MPN disease state with compassionate care. It is not uncommon for Dr. Holroyde to answer patient e-mails within an hour, effectively addressing questions and easing patient concerns. He enables patients and caregivers to understand the importance of their monitoring and treatment plans, inspiring a confident, renewed perspective. As one patient put it, “The most important thing is that I’m a functional dad [again].”
     
     
     
    Heroes Category: Commitment to the Broader MPN Community
     
    David T. Boule, Patient Advocate
    Nominator: Richard T. Silver, MD
     
    David T. Boule is an MPN Hero in the category of Commitment to the Broader MPN Community. His activities have supported published research, international patient outreach, strategic planning for the MPN Research Foundation, and grant pledges in excess of $4 million for the Myeloproliferative Neoplasm Center.

    David’s dedication to improving the lives of people with MPNs is backed by unparalleled organizational leadership. He is Chair of the Finance Committee and Treasurer of the MPN Research Foundation, and serves as President of the Cancer Research & Treatment Fund, an organization emphasizing MPNs. Recently, David led the 8th International Patient Symposium on Myeloproliferative Neoplasms, one of three biennial educational events that he organized for patients and their families that highlights developments in MPN research. The thought of finding a cure for MPNs is what drives David’s sensitivity to the needs of individual patients. To that end, David has had an enormous impact on the MPN world.
     
     
     
     
    Harvey Lawrence Gould, Patient Advocate
    Nominator: Diane Blackstock
     
    Harvey Lawrence Gould is an MPN Hero in the category of Commitment to the Broader MPN Community. In spite of his myelofibrosis (MF), acute myeloid leukemia, and subsequent allogeneic stem cell transplantation, Harvey’s indomitable spirit, sense of humor, musical talent, and love of life inspired others. “Harvey oozed HOPE—even in desperate times.” As a regular columnist for MPNforum, Harvey served on the MPNforum board of directors and the editorial review board. As a friend, however, he had a way of devoting himself wholeheartedly to the people in his life. Those close to him have said, “To be in his presence was to have his full attention.”

    Harvey is recognized for helping to advance the science of MPNs because he advocated for free MF genetic testing/studies offered by 23andMe. In addition, his generosity has contributed to the CREATE seminar (CRISPR/Cas9 Edited Autologous Transfusion Exploration) to improve the stem cell transplant process.
     
     
     
     
    Susan Melvin Hill, Patient Advocate
    Nominator: Joanna Jost
     
    Susan Melvin Hill is an MPN Hero in the category of Commitment to the Broader MPN Community. Susan’s journey began when she transitioned from myelofibrosis patient to dedicated patient advocate. In her dedication to help others with MPNs, Susan established Idaho’s first and only MPN support group. She currently mentors patients with MPNs in several states.

    Susan continues to be involved in grassroots awareness activities. These include organizing the annual Rare Disease Day at the Idaho State Capitol, working to include MPN educational materials in the Leukemia & Lymphoma Society’s annual Light the Night Walk, supporting MPN Awareness Day with Governor’s Proclamations, and providing feedback on educational and patient advocacy materials for MPN publications. When she is not supporting MPN activities, Susan somehow finds the time to knit blankets for babies in the neonatal intensive care unit of her local hospital.
     
     
     
     
    MPN Research Foundation, Patient Organization
    Nominators: Zhenya Senyak and Michelle Woehrle
     
    The MPN Research Foundation (MPNRF) is an MPN Hero in the category of Commitment to the Broader MPN Community. As one of the premiere organizations that reaches the entire MPN community of patients, family members, doctors, and researchers, MPNRF has a single goal: to stimulate original research in pursuit of new treatments—and eventually a cure—for MPNs. Guiding MPNRF are Chairman of the Board of Directors, Robert Rosen; President Barbara Van Husen; and Executive Director Michelle Woehrle. It is through their team approach that MPNRF was nominated as an MPN Hero.

    Bob formed MPNRF in 1999 after being diagnosed with polycythemia vera. Barbara joined him to organize the solicitation and awarding of grant proposals for MPN research. Together, they directed a significant investment into promising research options, with the aim to benefit patients as soon as possible.

    Along with Michelle, MPNRF recently created a framework to fund new investigators and has given away more than $10 million for more than 50 international research projects. Evidence of the organization’s impact on the broader MPN community can be seen with the recent MPN Challenge grants. These grants have resulted in the discovery of the CALR mutation and in the creation of the MPNRF website (www.mpnresearchfoundation.org), which has registered nearly 19,000 patients and supporters and provides information on MPNs and clinical trials to nearly 200,000 visitors annually.
     
     
     
     

     

    2015 3rd Annual MPN Heroes™ Recognition Gala Media
     
     
     
     
     


    2014 2nd Annual MPN Heroes™ Recognition Gala Photos
     
     
    Heroes Category: Commitment to the Individual
     
    Ross L. Levine, MD
     
    Dr. Levine has had an enormous impact on MPN research. His many innovative contributions include the codiscovery of a key gene mutation, development lead in important clinical research, and development of drug treatment approaches to clinical trials for MPNs.
     
     
    Elliott Winton, MD
     
    Dr. Winton is a distinguished researcher who conducted the first bone marrow transplant at Emory University Hospital in 1979. In addition to advancing the science of MPNs through continued research, he’s an esteemed physician who spends endless hours talking with patients at the Cancer Support Community, national MPN organizations, and local MPN support groups.
     
     
    Erin H. Blackwell RN, BSN, OCN®
     
    Erin is renowned for her compassion and exceptional dedication to her MPN patients at the Levine Cancer Institute. She excels at personalized patient care, can recall details about most of her patients, and gets back in touch with patients – even in her off hours.
     
     
    Bonnie Joyce Blankert, Caregiver
     
    Bonnie left her home and family for 2 months to care for a friend who needed stem cell transplant surgery due to complications of post-essential thrombocythemia myelofibrosis. Without a designated caretaker, her friend would have not been eligible to have the transplant surgery.
     
     
    Heroes Category: Commitment to the Broader MPN Community
     
    Ann Brazeau, Patient Advocate
     
    Ann is the founder and CEO of MPN Advocacy & Education International. Her devotion to grassroots education and services for the MPN community has made her a legendary patient advocate—especially for underserved populations.
     
     
    Patricia K. Koenig, Patient Advocate
     
    Patricia’s cheerfulness and inner strength encourage others who live with polycythemia vera (PV). Patients may be searching for hope after they are diagnosed with PV, and they find hope when they meet Patricia and hear her story of courage.
     
     
    Andrew Schorr, Patient Advocate
     
    Andrew’s experiences with chronic lymphocytic leukemia and myelofibrosis inspired him to found Patient Power® and Patient Empowerment Network, well-regarded online portals offering authoritative cancer information. Andrew travels widely to interview top MPN experts and also reaches out to patients in MPN support groups, offering knowledge to help them become more empowered and informed.
     
    David Wallace, Patient Advocate
     
    David publishes PV Reporter and MPN Cancer Connection, informative websites for patients with MPNs. Diagnosed with polycythemia vera, David is devoted to helping other patients get information and resources to help them live with their MPNs.
     
     
    2016 4th Annual MPN Heroes™ Recognition Gala Photos
     
    All photos credited to Emilio Azevedo.
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