WE HONOR THE 2016 MPN HEROES®!

You nominated them for making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Click on each of the photos to learn about the 2016 MPN Heroes who have been acknowledged for their commitment to MPN care and to hear their personal stories.

Erin Blackwell is an MPN Hero in the category of Commitment to the Individual. She is renowned for her compassion and exceptional dedication to each of the patients with myeloproliferative neoplasms (MPNs) at her workplace, the Levine Cancer Institute.

Committed to personalized patient care, Erin is determined to address a variety of MPN issues for her many patients. She gives patients her cell phone number and responds to their calls even in off-hours. Erin’s colleagues commend her commitment to her patients as well as her incredible recall about the many patients she’s seen at the clinic. When not building relationships with her patients, Erin spends countless hours raising MPN awareness through the Levine Cancer Institute and Patient Power®.

Ann Brazeau is an MPN Hero in the category of Commitment to the Broader MPN Community. She is the founder and CEO of MPN Advocacy and Education International. Her devotion to grassroots education and services for the myeloproliferative neoplasm (MPN) community has made her a legendary patient advocate.

Ann’s passion for helping patients and caregivers extends to underserved populations. She launched the Women & MPN Initiative to raise awareness of specific issues faced by women with MPNs. Ann works tirelessly to represent Vietnam veterans with MPNs and to stress the importance of research into pediatric MPNs. Ann maintains her effectiveness in bringing grassroots services for the MPN community by attending MPN scientific conferences and communicating the scientific information so it can be universally understood by the MPN patient community.

Bonnie Blankert is an MPN Hero in the category of Commitment to the Individual. In a remarkable gift of selflessness, Bonnie put her own life on hold to become a caregiver for a friend who needed a stem cell transplant due to complications of post-essential thrombocythemia myelofibrosis (post–ET MF).

Her friend, Beatrice, lives more than 1,000 miles away from Bonnie’s home. With no family close by and no one to provide post-surgical care, Beatrice needed a designated caregiver—or she would become ineligible for the transplant. So Bonnie left her home, family, and job for two months to assume day-to-day caregiver responsibilities. Thanks to Bonnie rising to the challenge, Beatrice received and recovered from the transplant surgery and looks forward to yearly visits from Bonnie and her family.

Patricia Koenig is an MPN Hero in the category of Commitment to the Individual. Patricia uses her 60-year experience with polycythemia vera (PV) to inspire patients with confidence in living with a myeloproliferative neoplasm (MPN). At MPN conferences, she seeks out newly diagnosed patients and their caregivers to help quell their uneasinesss with real-life examples of courage and hope.

Patricia’s PV symptoms began at a young age, but a correct diagnosis eluded her for more than 30 years. Perhaps that is why Patricia is passionate about speaking with other PV patients. Patricia gives fellow patients a better understanding of what to expect from PV. Her determination in overcoming many of the obstacles of PV was in full force when she took on “grandma duties,” caring for her grandchildren and putting family first.

Dr. Ross Levine is an MPN Hero in the category of Commitment to the Broader MPN Community. A dedicated physician-scientist, he is the director of the Center for Hematologic Malignancies. Over the past 10+ years, his groundbreaking contributions have had an enormous impact on research for myeloproliferative neoplasms (MPNs).

His many innovative contributions include investigating the genetic basis of blood cancers, researching the activation of signal transduction pathways, translating molecular insights into new therapies, investigating disease progression, and developing drug treatment approaches to MPN clinical trials.

Dr. Levine has inspired many of his colleagues to pursue MPN research in hopes of improving outcomes for patients.

Andrew Schorr is an MPN Hero in the category of Commitment to the Broader MPN Community. He is a nationally recognized medical journalist and patient empowerment advocate. He has also been treated for chronic lymphocytic leukemia (CLL) and myelofibrosis (MF).

As a patient himself, Andrew realized the need for patients to have access to the latest information about their disease. Motivated and inspired, he and his wife, Esther, founded Patient Power®, an online portal offering authoritative cancer information. Andrew also formed the Patient Empowerment Network, designed to give patients knowledge to make informed decisions about their care. In 2011, Andrew authored The Web-Savvy Patient: An Insider’s Guide to Navigating the Internet When Facing Medical Crisis, a step-by-step guide that offers patients practical information and stories of patient empowerment. Andrew and his work empower patients all over the world to learn, reach out, and get the information they need to become their own advocates.

David Wallace is an MPN Hero in the category of Commitment to the Broader MPN Community. Diagnosed with polycythemia vera (PV) in 2009, David created PV Reporter and its sister website, MPN Cancer Connection. The patient-focused myeloproliferative neoplasm (MPN) hubs give members of the MPN community easy online access to resources as they start learning about their MPN.

Early on, David realized how important it is for newly diagnosed patients to have a one-on-one connection with a patient who is farther along in their journey with an MPN. That’s why he reaches out to others in the MPN community. He connects with other patients via email, Facebook groups, and MPN patient meetings. He knows what affects PV patients and addresses those topics in order to share relevant information at the point of need.

Dr. Elliott Winton is an MPN Hero in the category of Commitment to the Individual. Whether speaking with care and concern to individual patients or answering questions from members of a myeloproliferative neoplasm (MPN) support group, he has dedicated his career to improving the quality of life for patients with MPNs.

As a pioneering researcher, Dr. Winton’s efforts to improve therapy for patients have advanced the science of MPNs at the Winship Cancer Institute at Emory University. He was instrumental in securing the institute’s membership in the Myeloproliferative Disorder Research Consortium (MPD-RC). As a result, local patients have improved access to several planned clinical trials at Winship. Dr. Winton’s additional contributions include collaborating to establish the first stem cell transplant program in Georgia.

2016 Steering Committee

An independent steering committee reviews the nominations and selects the recipients for recognition. The committee was made up of:

Diagnosed with essential thrombocythemia (ET) in 2014, Rebecca has taken a special interest in myeloproliferative neoplasm (MPN) education and awareness. She is currently an Oncology Nurse Educator for RxCrossroads/Merck. In her previous roles at The University of Kansas Cancer Center, she was able to provide education and support to MPN patients, caregivers, and nurses, providing hands-on care to these patients. Rebecca was recognized for her dedication to that education and support in 2015 with an MPN Heroes Award. Most recently, she was a resource for an article that ran in Oncology Nursing News, "Diagnosing and Treating Myeloproliferative Neoplasms."

Emily is an essential thrombocythemia (ET) patient, blogger, and patient advocate. She was diagnosed with ET at the age of 18. She has chronicled her treatments in her blog, linampn.com, with her motto, "You are your own best advocate. If you don't stand up for yourself, who will?" She is constantly encouraging patients to learn as much as they can about their diagnosis, and to participate as fully as possible in their healthcare teams.

Over the last several years, Emily has participated in several events promoting education, awareness, and funding for the myeloproliferative neoplasm (MPN) community. Some of these events include: One Voice Against Cancer in Washington, DC, during which she spoke to Congressional representatives, Patient Power's Living Well With MPNs series, the National Organization for Rare Diseases MPN Spotlight event, and the Women and MPNs event put on by the MPN Advocacy and Education International group. She also volunteers as a mentor with Imerman Angels.

Emily lives in St. Louis, MO with her muses: her husband Michael, AKA "M", and their two dogs.

Dr. Susan Leclair is chancellor professor emerita at University of Massachusetts Dartmouth. She has been a lab professional for more than 40 years and her clinical interests include clinical hematology and oncology, human genetics, and bioethics. Dr. Leclair currently moderates Patient Power® Town Hall meetings for the Chronic lymphocytic leukemia (CLL), myeloproliferative neoplasm (MPN), Lung Cancer, and Melanoma communities. In addition, she is writer and presenter for Patient Power’s Improving Understanding of Patients and Their Laboratory Tests program.

Dr. Leclair is also third term Editor-in-Chief for the journal Clinical Laboratory Science. In 1999, Dr. Leclair created the American Society for Clinical Laboratory Science Consumer Information Response team, which now consists of approximately 50 clinical laboratory scientists across the major disciplines and from multiple professional organizations. The team handles questions from patients, healthcare practitioners, and caregivers around the world about how to interpret their laboratory test findings. She has provided similar services to people on the ACOR.org MPN-net, CLL, and CLL/small lymphocytic lymphoma (SLL) list serves since 1994.

Dr. Ross Levine is a physician-scientist focused on researching and treating blood and bone marrow cancers, including acute myeloid leukemia and the chronic myeloproliferative neoplasms polycythemia vera, essential thrombocythemia, and primary myelofibrosis.

Caring for leukemia patients during his residency and fellowship inspired Dr. Levine’s interest in the disease. He saw that while treatments could be quite effective the first go-round, many leukemia patients often relapse. That got him thinking about how he could better understand why leukemia develops and how the community could create new, targeted treatments to improve patient outcomes.

When Dr. Levine is not running his research lab, he treats people with leukemia on an inpatient basis. He does approximately 30 procedures a year, most of which are bone marrow biopsies.

Dr. Levine acknowledges that many patients feel overwhelmed when they are first diagnosed, so he feels it is his responsibility to give them the information they need and to show them that a whole team of experts is available to help them through the process. His hope is that upon meeting him and his team, patients leave feeling empowered and hopeful.

Outside of work, Dr. Levine enjoys spending time with his family, playing tennis and squash, and rooting for the New York Mets!

*As a member of the judging panel, Dr. Levine agreed to remove himself from voting for any recognition where his own work, institution, or relatives were nominated.

Marina Peed transferred her career skills in community revitalization to her own physical revitalization when she unknowingly joined the myeloproliferative neoplasm (MPN) club in 2007. Thanks to an unrelated stem cell donor and numerous blood and platelet donors, Marina is in complete remission from post–polycythemia vera myelofibrosis.

Marina remains active in the MPN community to share hope, humor, and advocacy for the whole patient. She is the administrator of MPNsupport.com, a website of patient-curated resources for people living with MPNs. Marina is also a founder of the MPN Action Network, and a contributing writer to MPNforum, MPN Advocacy & Education International, and other outlets. To help newly diagnosed patients find invaluable patient support resources, Marina is an MPN and SCT patient support volunteer with the Leukemia & Lymphoma Society, Be the Match, Imerman Angels, and the Bone Marrow Foundation.

Marina lives in her empty nest in Georgia with her husband, Robert, and Toula, her therapy rescue-dog. She is grateful to be here, and follows the adventures of her two college kids and abundance of nieces and nephews.

Diagnosed with invasive breast cancer in 1986, Kathy LaTour had a mastectomy and chemotherapy and has been active in the national survivor community ever since, speaking to survivor, medical, and lay audiences about the need for psychosocial support. Ms. LaTour experienced a second diagnosis of breast cancer resulting in a second mastectomy in fall 2007. Her book, The Breast Cancer Companion, was published by William Morrow and Co. in 1993.

In 2001, she cofounded CURE magazine with Dr. Vinay Jain. Today she is editor-at-large of the publication, which is the largest direct-to-patient cancer magazine in the country. For her writing on cancer she has received numerous awards, including a first place from the Association of Health Care Journalists in 2011 for her article "The Cost of Living," which looked at the late effects of radiation for long-term survivors.

In 2004, she debuted her one-woman show "One Mutant Cell," a humorous and poignant account of her journey through breast cancer, which she has performed more than 50 times for a variety of cancer events around the country.

She served for 4 years on the board of the National Coalition for Cancer Survivorship, and helped found Gilda's Club North Texas, now known as Cancer Support Community North Texas. She was also instrumental in founding The Bridge Breast Network in Dallas, a unique coalition of breast cancer survivors and area Healthcare Professionals who are providing diagnosis and treatment to uninsured women who may have breast cancer.

WE HONOR THE 2015 MPN HEROES®!

You nominated them for making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Click on each of the photos to learn about the 2015 MPN Heroes who have been acknowledged for their commitment to MPN care and to hear their personal stories.

David 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 dollars 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.

Rebecca 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, Becca’s tireless advocacy brings MPNs to the forefront for her peers and provides a sense of hope for patients.

David Denny is an MPN Hero in the category of Commitment to the Individual. He is affiliated with two online support groups: the Myelofibrosis Private Support Group and MPNforum.

David is passionately committed to helping people 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 material. David not only welcomes people into the MPN community, but he also strives to empower individuals to help their voices and concerns be 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.

Dr. Jason 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 as well as for a database registry specifically for MPN research. In addition, Dr. Gotlib is acclaimed for his leadership in professional and patient education conferences. In addition to 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.

Harvey 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 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 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. Susan 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 education materials in the Leukemia & Lymphoma Society’s annual Light the Night Walk, supporting MPN Awareness Day with Governor’s Proclamations, and providing feedback on education 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.

Dr. Christopher 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. Dr. Holroyde 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].”

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, the MPNRF has a single goal: to stimulate original research in pursuit of new treatments—and eventually a cure—for MPNs. Guiding the 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 the MPNRF is nominated as an MPN Hero in the category of Commitment to the Broader MPN Community.

Bob formed the 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, the MPNRF has recently created a framework to fund new investigators and has given away more than $10 million for over 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 MPNRF website, which has registered nearly 19,000 patients and supporters and provides information on the MPNs and clinical trials to nearly 200,000 visitors annually.

2015 Steering Committee

An independent steering committee reviewed the nominations and selected the recipients for recognition. The committee was made up of:

David Wallace is the publisher of PV Reporter, a comprehensive resource website for myeloproliferative neoplasm (MPN) patients. The driving force is to help patients get up-to-speed as quickly as possible. By highlighting and organizing the great efforts of many organizations, individuals, and contributors, PV Reporter can accelerate the steep learning curve for patients, while helping them make better decisions about their treatment plan.

After being diagnosed with polycythemia vera in 2009, David utilized social media to connect with “informed patients” and developed a better understanding of emerging treatment options. His philosophy on patient care is straightforward—“educating the patient is essential, so the patient can guide the physician to meet his or her needs.” He values the “collective intelligence” as a vital tool for the empowered patient. A growing role as patient advocate continues to emerge as PVReporter evolves.

Dr. Palos is actively involved in community service activities advocating for cancer patients, caregivers, and their families. She believes collective communication between patients, families, and Healthcare Professionals is the foundation for achieving high quality care. Dr. Palos is the Clinical Research Manager in the Office of Survivorship in the Division of Medical Affairs at The University of Texas MD Anderson Cancer Center (MDA). She is a nurse scientist as well as a licensed masters-prepared social worker and registered nurse.

Michelle Taymuree received an undergraduate degree from the University of California at Berkeley, and a Doctorate of Pharmacy from the University of Maryland, Baltimore in 2008. She also earned a Masters of Business Administration from the University of Baltimore, Merrick School of Business in 2008.

Michelle is a member of the American Society of Health-System Pharmacists (ASHP), the California Society of Health-System Pharmacists (CSHP), and the California Pharmacists Association (CPhA). Michelle provides educational talks in the community, volunteers with East Bay College Fund, and is a mentor at the Berkeley YMCA.

Diagnosed with polycythemia vera (PV) in 1998 and myelofibrosis (MF) in 2004. Ron underwent a splenectomy and stem cell transplant in 2008 and is in complete remission from MPN disease.

Ron currently leads the Los Angeles MPN support group. He speaks and presents to groups, individuals, and caregivers of the MPN community nationwide.

Diagnosed with invasive breast cancer in 1986, Kathy LaTour had a mastectomy and chemotherapy and has been active in the national survivor community ever since, speaking to survivor, medical, and lay audiences about the need for psychosocial support. Ms. LaTour experienced a second diagnosis of breast cancer resulting in a second mastectomy in fall 2007. Her book, The Breast Cancer Companion, was published by William Morrow and Co. in 1993.

In 2001, she cofounded CURE magazine with Dr. Vinay Jain. Today she is editor-at-large of the publication, which is the largest direct-to-patient cancer magazine in the country. For her writing on cancer she has received numerous awards, including a first place from the Association of Health Care Journalists in 2011 for her article The Cost of Living, which looked at the late effects of radiation for long-term survivors.

In 2004, she debuted her one-woman show "One Mutant Cell," a humorous and poignant account of her journey through breast cancer, which she has performed more than 50 times for a variety of cancer events around the country.

She served for four years on the board of the National Coalition for Cancer Survivorship, and helped found Gilda's Club North Texas, now known as Cancer Support Community North Texas. She was also instrumental in founding The Bridge Breast Network in Dallas, a unique coalition of breast cancer survivors and area health care professionals who are providing diagnosis and treatment to uninsured women who may have breast cancer.

Dr. Laura C. Michaelis specializes in clinical research and the care of individuals with chronic and acute leukemias. She is particularly interested in new drugs for myeloproliferative neoplasms and ways to engage the patient community in research and advocacy for orphan drugs. Prior to starting medical school, Dr. Michaelis worked for nine years as a newspaper and magazine reporter.

WE HONOR OUR 2014 MPN HEROES®!

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.

Diane is a proactive "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.

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 need for additional MPN awareness among patients and Healthcare Professionals, Antje and two friends became list owners of MPN-NET.

In 2009, Antje became the director of the MPN Education Foundation, which serves about 3,000 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.

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 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.

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.

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.

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 on the MPN community is immeasurable.

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.

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 care-taking 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.

2014 Steering Committee

An independent steering committee reviewed the nominations and selected the recipients for recognition. The committee was made up of:

Abdulraheem Yacoub, MD is an Assistant Professor of Medicine in the Division of Hematology and Oncology at the University of Kansas Medical Center. He is active in clinical and translational research in the field of myeloproliferative neoplasms (MPNs) and a member of the American Society of Hematology, American Society of Clinical Oncology, and the Myeloproliferative Disorders Research Consortium. Dr. Yacoub is a strong advocate for patients living with MPNs; in 2013, he was recognized for his efforts, being awarded the MPN Heroes Recognition award for contributions to the MPN field.

I am originally from South Dakota. I received my Bachelors of Arts in Nursing at Augustana College, Sioux Falls, South Dakota in 2005 and worked as an inpatient nurse at Avera McKennan Hospital and University Health Center on a hematology, oncology and bone marrow transplantation floor for five years. I then moved to Arizona and have been working at the Mayo Clinic in the Hematology Myelodysplastic Syndromes/Myeloproliferative neoplasms clinic for the last three years. I am currently working towards my Masters in Nursing for a Nurse Practitioner degree. Outside of work and school I enjoy staying active, spending time outside hiking and traveling.

Cheryl Martz is the Director of a Community Cancer Support Group Program in Rochester, Michigan, which is the longest-running cancer support group in the state. A survivor of abdominal cancer, she has been directing, promoting, and facilitating this program for 24 years. Her education includes a Bachelor of Arts in English and Mathematics from Baylor University and a Masters in English from Tulsa University.

Before moving to Michigan in 1988, Cheryl taught high school mathematics and college English in Texas and Oklahoma, as well as working for the Metropolitan Transit Authority in Houston, Texas, as director of the Vanshare/Carshare program for three years. Her interest in the MPN Heroes Recognition program was initiated by involvement and work with patients in her group diagnosed with an MPN, and then strengthened by increased knowledge of the notable goals of this program.

Diagnosed with invasive breast cancer in 1986, Kathy LaTour had a mastectomy and chemotherapy and has been active in the national survivor community ever since, speaking to survivor, medical, and lay audiences about the need for psychosocial support. Ms. LaTour experienced a second diagnosis of breast cancer resulting in a second mastectomy in fall 2007. Her book, The Breast Cancer Companion, was published by William Morrow and Co. in 1993.

In 2001, she cofounded CURE magazine with Dr. Vinay Jain. Today she is editor-at-large of the publication, which is the largest direct-to-patient cancer magazine in the country. For her writing on cancer she has received numerous awards, including a first place from the Association of Health Care Journalists in 2011 for her article The Cost of Living, which looked at the late effects of radiation for long-term survivors.

In 2004, she debuted her one-woman show "One Mutant Cell," a humorous and poignant account of her journey through breast cancer, which she has performed more than 50 times for a variety of cancer events around the country. She served for four years on the board of the National Coalition for Cancer Survivorship, and helped found Gilda's Club North Texas, now known as Cancer Support Community North Texas. She was also instrumental in founding The Bridge Breast Network in Dallas, a unique coalition of breast cancer survivors and area health care professionals who are providing diagnosis and treatment to uninsured women who may have breast cancer.

I'm a pretty average person with a crazy disease.

I was born and raised in Kansas City, the heart of America. My parents were educators so every summer my Dad got the travel bug and packed us in the station wagon and off we went to our next summer adventure. With my parents, my brother and I saw 46 of the 50 states, parts of Canada, a summer Olympics, the Rose Parade, the Northern lights on a cool Minnesota evening, tasted fresh clam chowder, and of course fought like crazy in the back seat (there were no portable DVD players or iPads at that time). So I blame my parents for giving me the urge to travel – as much as I can – to as many places as possible. Whether it is a trip up to Minnesota for a week on the lake with friends or to visit my niece in Australia – I'm ready to go!

When I'm home, I'm always up for a walk. I'm not a runner or a hiker. I'm a walker. A walk around the neighborhood. A walk around the lake. A walk to the store. A walk for a cause. I just like to go for walks.

My other "hobby" is my kids. Yes most people have knitting or mountain biking as a hobby. But for me it's spending time with my kids. It might entail a tennis match to watch my Goddaughter, taking my grandkids to the lake for the day and a paddle boat ride, delivering brownies to my nephew at college 45 minutes away, dinner with my son, driving 2 1/2 hours for lunch with my Goddaughter or FaceTime with my niece.

I was diagnosed with Primary Myelofibrosis in November of 2008. As time has passed, I continue to learn about MPNs, blood counts, and how my body reacts to MF and my treatments. I'm so thankful I am still able to have an active life. However, I have learned, like it or not, to stop more, rest more, and listen to my body.

I have amazing friends and family that make me laugh, celebrate my victories, lend a hand when needed, and always support me. I feel very blessed.

WE HONOR OUR 2013 MPN HEROES®

Elizabeth's role as a caregiver to a husband living with an MPN was the inspiration behind her nomination in the category of Commitment to the Individual. Her husband, Gary, nominated Elizabeth for her courage and strength in helping him overcome obstacles associated with his illness.

From the time her husband was diagnosed with an MPN, Elizabeth has given selfless attention to his condition. Immediately following the news of his initial prognosis, she took action to see a specialist for a second opinion and to see what else could be done for him. Not willing to accept the dire prognosis first given, she stepped up to advocate for her husband, who was the only person in his city diagnosed with this MPN. As a result, she was able to get proper care and treatment for her husband.

Elizabeth has been by her husband's side every day since his diagnosis, helping him feel as if he can get through problems that arise. In his words, "At times I get down and moody, but with my wife's support and love, she picks me up."

Sara is a social worker with expertise in patient advocacy. Her career has included many roles, including working with families in hospice-care facilities; serving as a program director at Gilda's Club; traveling around the country speaking to researchers, healthcare providers, and patients about patient advocacy; and training people for work involving cancer patient support care.

Sara was nominated by June Fox, a long-time friend who is living with myelofibrosis, in the category of Commitment to the Individual. Specifically, she was nominated for increasing an individual's ability to get access to better care and treatment.

Sara's expertise in MPNs stems from a request made of her 2 years ago by a patient advocacy group supporting people with myelofibrosis. Sara was asked to provide guidance on how the group could offer assistance to people with this rare and poorly understood condition. Sara approached the request with diligence, dedication, and compassion, researching and learning all she could about myelofibrosis and other MPNs. Two years later, she is an outstanding patient advocate who offers people living with MPNs compassionate support, including direction to support services, clarity, and hope for improved quality of life. Today, she speaks out on patient advocacy at symposia, provides training to other social workers, and runs support groups for people living with MPNs.

In June's words, "She met countless needs I had for navigating my way post-diagnosis. She met all my psychological needs. Her background as a social worker with vast experience in the cancer community as well as her innate interpersonal skills contributed to her ability to do this. She took me from confusion and fear to clear thinking, a proactive role in my own care, and an optimism that I can deal with this."

An attorney and a corporate officer, Ashley became committed to advancing the science of MPNs when her father was diagnosed with myelofibrosis. Nominated by her father, Harvey Gould, in the category of Commitment to the Broader MPN Community, Ashley exemplifies the qualities of an MPN Hero in her commitment to act proactively to alleviate the ravaging effects for her father and all others suffering from an MPN.

Ashley made tangible contributions to advancing MPN care when she worked for 23andMe, a leading health and ancestry DNA service. Ashley wrote a blog titled "My Father, Myelofibrosis, and Me," in which she shared her personal experience as a caregiver of a parent living with an MPN and encouraged others to help join together as a community in advancing the science of MPNs.

A source of great strength for her father, Ashley was driven to help create a community of MPN patients so that research and science could advance the recognition and treatment of these rare disorders. The love for her father, combined with her desire to do good for a broader community, makes her an MPN Hero.

When Ron came to a cancer support group a few years ago to get help for himself on his journey with an MPN, he immediately began reaching out to others and giving of his own time and support. As a result, Cheryl Martz, a patient advocate running the support group, nominated him in the category of Commitment to the Individual for his courage and strength in helping people with MPNs overcome obstacles.

Ron is committed to being a part of discovering every means of fighting MPNs, and his intelligence and dedication to discovering every means of fighting MPN is an inspiration to everyone in the cancer support group. He is an articulate speaker whose words at a banquet organized by the support group had the entire room awed, shored up, and comforted.

Ron is also a trained First Connection Volunteer with the Leukemia & Lymphoma Society. In this role, he contacts newly diagnosed MPN patients in several states and puts them in touch with other MPN individuals who have the same diagnosis as them and get support. In addition, Ron is an active member of both blood cancer support groups and cancer support groups, and his participation in these groups helps to give others hope and support in their life journey with cancer.

Nominated for Commitment to the Broader MPN Community by Rachel Warbet, a staff member at Mount Sinai Medical Center, Dr. Mascarenhas has been instrumental in advancing the science of MPNs. He shows consistent dedication to the many MPN patients he cares for and to the MPN community at large through clinical research and interactions with patient support groups.

Acknowledged for his excellent bedside manner, Dr. Mascarenhas employs empathy and open communication with his patients. He consistently offers reassurance, and even gives his patients his cell phone number so that he is available to them after hours. In return, his patients express how lucky they are to have him as their physician.

As a hematologist who specializes in caring for MPN patients, Dr. Mascarenhas takes the time to explain to his patients in simple ways the issues associated with these conditions and possibilities for treatment. In addition to his dedication and compassion for his patients, he conducts clinical research aimed at improving the lives and outcomes for people diagnosed with MPNs. His research results have been published in peer-reviewed journals, and he lectures across the country on his findings.

Because of his involvement in a robust Mount Sinai MPN research program, Dr. Mascarenhas's patients convey that they feel they are being cared for by a true expert with a passion for caring for people with MPNs.

A well-respected hematologist at the Mayo Clinic in Scottsdale, Arizona, Dr. Mesa was nominated by a patient and advocate, Ron Kruszewski, for Commitment to the Individual. His experience treating patients with MPNs has been described as "part of his DNA," and his passion and perseverance in advancing the science of MPNs has made him a leader in his field among both patients and peers.

Dr. Mesa is a true advocate for MPN research, providing outstanding patient care, promoting education to patients and caregivers, and overall elevating MPN awareness. He even went so far as to train for and run an Ironman Triathlon Race to raise money for MPN research.

Dr. Mesa was the first to create and implement a series of MPN Blood Cancer Conferences that focus on patients and their caregivers. At these conferences, healthcare providers with expertise in MPNs share their professional knowledge and present their latest findings and knowledge. Patients and caregivers from all over the country and even from other countries travel to these conferences to learn more about the latest MPN developments. Many regional MPN conferences have been created as a result of this information exchange, and Dr. Mesa continues to support the regional conferences as well with his presence. He uses social media to educate patients, posting YouTube videos about MPNs.

Dr. Yacoub was nominated by Coralee Pickert, a nurse at the Cancer Center, for advancing the science of MPNs in the category of Commitment to the Broader MPN Community. In Coralee's own words, "Between long hours and happier MPN patients, Dr. Yacoub deserves to be recognized for not only his service towards helping the MPN population, but also for the education he is providing for future MPN patients."

Dr. Yacoub has been instrumental in research advancements for MPNs and strongly advocates for his patients. He is committed to providing education and support to MPN patients and works hard to determine not only the right treatment plans for them but also to provide access to financial assistance. His approach is to diligently track the symptoms of his patients and to intervene early to help minimize problems that may arise. Through his intimate involvement with his patients, Dr. Yacoub is quick to notice any changes in their status and acts promptly to combat challenges.

In addition to his hands-on patient approach, Dr. Yacoub stays up to date on cutting-edge research and works cooperatively with patients and research to bring these two aspects together. He believes that education is the biggest investment in taking care of MPN patients. For Dr. Yacoub, treating and supporting MPN patients is not just a job. It is a passion.

2013 Steering Committee

An independent steering committee reviewed the nominations and selected the recipients for recognition. The committee was made up of:

George H. Steele, a person living with essential thrombocythemia (ET)

I was born on April 1, 1948 in Charleston, SC, and yes, it is better to be an April Fool than an all-year-'round one. I grew up on a small barrier island, Folly Beach, just a few miles Southeast of Charleston, and attended local public schools. I spent large parts of my formative years enjoying the natural beauty and bounty of the marine environment, both ocean and estuary. My close to 38-year career with the Marine Division of the South Carolina Department of Natural Resources has been an almost necessary result of my upbringing.

It hasn't all been marine science though. For the first 6 years of my young adult life, I played rock 'n roll for a living. And in recent years, I came back to music as a baritone in the Charleston Men's Chorus. Sadly, symptoms of my ET have finally brought an end to performing. I'm still a heck of a critic, though!

In between rock 'n roll and marine science, was about 4 years of heavy construction (bridges, mostly) down in the Florida Keys. The construction business gave me a skill set that has been, and continues to be, useful in a wonderful variety of ways in my life. I came to work here at the Marine Resources Department in 1976 as a Technician. Several years later, I became a biologist and about 10 or 12 years ago, I moved into Data Management in the Commercial Fisheries Statistics Section. I still get to go out and play on the water when I want to, but field biology is a young person's job.

I met my lovely wife, Peggy, at a New Year's Eve party in 1979, and we were married on New Year's Eve of 1980. She has learned far more about the world of MPNs than she ever dreamed. Her love and support are incredibly valuable and important in my life. After a baffling period of chest pains, headaches, and visual migraines, which culminated in a mild MI (myocardial infarction), I was diagnosed (in 1983) with essential thrombocythemia (ET). I became an avid runner and competitive cyclist, but finally, my ET began to slow me down. These days I walk several miles a day and do mild resistance work, but my competitive days are a thing of the past.

I plan to retire in 1 year, 2 months, and 14 days (but who's counting?) and relocate to the North Georgia Mountains. The coast has become too expensive and I've been through hurricane season enough times now. In North Georgia, I plan to ride my motorcycle, cook gourmet meals, and fly fish for trout in the many streams and rivers of the Chatahoochee National Forest.

Allan M. Miller, MD, a physician at Grand Mesa Oncology and Hematology

Allan M. Miller, MD is a physician at Grand Mesa Oncology and Hematology in Delta, CO. He first received his Bachelor of Science in Pharmacy from Purdue University in West Lafayette, IN; Dr. Miller then earned his Healthcare Professionalate of Medicine from the Indiana University School of Medicine, Indianapolis, IN. He completed his residency in Internal Medicine at the Indiana University Hospital, Indianapolis, IN followed by a fellowship in Hematology and Medical Oncology at Beth Israel Hospital, Harvard Medical School, Boston, MA. Dr. Miller began his career serving in the United States Navy, National Naval Medical Center, Bethesda, MD. During his career, he was also a visiting scientist at TNO in Rijswijk, Netherlands and ran a private practice, Bloomington, IN.

Abbey Brockman, RN, BSN, a clinical nurse coordinator at the University of Kansas Cancer Center

Abbey Brockman, RN, BSN is a Clinical Nurse Coordinator at the University of Kansas Cancer Center. She first received a Bachelor of Science in Life Sciences from Kansas State University in Manhattan, KS and then expanded her education by attending nursing school at Nebraska Methodist College in Omaha, NE where she obtained a Bachelor of Science in Nursing. She completed her capstone at the University of Kansas Hospital on the oncology floor, where she feels her love for cancer patients truly began. Brockman started her nursing career off by caring for a broad spectrum of oncology patients on a busy cancer wing of a Kansas City hospital. Her passion for cancer continues, and she has developed a close relationship with hematologic malignancies at the University of Kansas Cancer Center where she works closely with physicians, researchers, and other Healthcare Professionals to enhance the overall experience for patients. Brockman's future nursing plans include becoming Oncology Certified and further advancing her nursing degree.

Mary Cobb, president of PatientVue, LLC

Mary is President of PatientVue, LLC, an advisory business dedicated to forging patient-centric partnerships to make a difference for the rare disease community. Integral to this business is a focus on guiding and empowering disease-specific patient groups, and aligning key interests in partnership with the life sciences industry to achieve common goals.

Previously, Mary spent several years as Senior Vice President, Membership & Organizational Strategy at NORD, the National Organization for Rare Disorders, the umbrella non-profit dedicated to advocacy, research, and education on behalf of the rare disease community. Mary was on the leadership team at NORD and led outreach and support of disease-specific patient groups, as well as collaborations with key external stakeholders to deliver on their critical mission. She was instrumental in growing the membership community and being the voice of patient advocates in partnerships with the pharma/biotech industry.

Prior to joining NORD, Mary has over 25 years experience as a leader at global communications agencies in strategic planning, marketing, communications, and patient and professional medical education in conjunction with industry partners. Mary was President and CEO of a healthcare communications agency within the Lowe Healthcare/Interpublic Group.

Mary is also an advocate for the growth, development, and contributions of women to the healthcare industry, both as a former President and Board Member of the HBA, Healthcare Businesswomen's Association. She holds an MS degree in Organization Development from American University in Washington, DC.

Kathy LaTour, co-founder and editor-at-large of CURE magazine

Diagnosed with invasive breast cancer in 1986, Kathy LaTour had a mastectomy and chemotherapy and has been active in the national survivor community ever since, speaking to survivor, medical, and lay audiences about the need for psychosocial support. Ms. LaTour experienced a second diagnosis of breast cancer resulting in a second mastectomy in fall 2007. Her book, The Breast Cancer Companion, was published by William Morrow and Co. in 1993.

In 2001, she cofounded CURE magazine with Dr. Vinay Jain. Today she is editor-at-large of the publication, which is the largest direct-to-patient cancer magazine in the country. For her writing on cancer she has received numerous awards, including a first place from the Association of Health Care Journalists in 2011 for her article The Cost of Living, which looked at the late effects of radiation for long-term survivors.

In 2004, she debuted her one-woman show "One Mutant Cell," a humorous and poignant account of her journey through breast cancer, which she has performed more than 50 times for a variety of cancer events around the country.

She served for 4 years on the board of the National Coalition for Cancer Survivorship, and helped found Gilda's Club North Texas, now known as Cancer Support Community North Texas. She was also instrumental in founding The Bridge Breast Network in Dallas, a unique coalition of breast cancer survivors and area Healthcare Professionals who are providing diagnosis and treatment to uninsured women who may have breast cancer.

Sponsors

MPN Heroes is a program sponsored by Incyte Corporation and in collaboration with CURE Media Group, publishers of CURE magazine.

LOOKING FOR INFORMATION ABOUT YOUR CONDITION?

Get key facts about myeloproliferative neoplasms such as polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF).

GET FACTS PV | ET | MF

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