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We Honor the 2016 MPN Heroes

You nominated them for making a difference in the lives of people living with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Hear their personal stories and learn why the 2016 MPN Heroes were acknowledged for their commitment to MPN care.

Image of Erin Blackwell, RN, BSN, OCN

ERIN BLACKWELL

RN, BSN, OCN®

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®.

Image of Ann Brazeau – Patient Advocate

ANN BRAZEAU

Patient Advocate

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.

Image of Bonnie Blankert – Caregiver

BONNIE BLANKERT

Caregiver

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 (PET-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.

Image of Patricia Koenig – Patient Advocate

PATRICIA KOENIG

Patient Advocate

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 uneasiness 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.

Image of Ross Levine – MD

ROSS LEVINE

MD

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.

Image of Andrew Schorr – Patient Advocate

ANDREW SCHORR

Patient Advocate

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.

Image of David Wallace – Patient Advocate

DAVID WALLACE

Patient Advocate

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.

Image of Elliott Winton – MD

ELLIOTT WINTON

MD

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 Judging Panel

An independent judging panel reviewed the nominations and selected the recipients for recognition. The panel consisted of:

Image of Rebecca Claassen RN, BSN, OCN

REBECCA CLAASSEN

RN, BSN, OCN

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." As of 2017, Becca Claassen is an Oncology Clinical Nurse Educator at Incyte.

Image of Emily Doering – Patient Advocate

EMILY DOERING

Patient Advocate

Emily is an 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 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 Disorders 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.

Image of Susan LeClair – PhD

SUSAN LECLAIR

PhD

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 CLL, 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/SLL list serves since 1994.

Image of Ross Levine – MD

ROSS LEVINE

MD

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.

Image of Maria Sampanes Peed – Patient Advocate

MARINA SAMPANES PEED

Patient Advocate

Marina Peed transferred her career skills in community revitalization to her own physical revitalization when she unknowingly joined the 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.

Image of Kathy Latour

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 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 Healthcare Professionals who are providing diagnosis and treatment to uninsured women who may have breast cancer.

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