Meet the Heroes

Heather Bowers has been an oncology nurse practitioner for 11 years. She started her journey working with MPNs early on in her career and took a special interest after taking care of one particularly impactful patient with polycythemia vera. She has been an advocate for patients with MPNs since that time. Along with her work, she enjoys spending time with her family and 3 Rhodesian Ridgebacks, and training in martial arts.

Heather holds both a Bachelor of Science in Nursing and a Master of Science in Nursing from the University of South Carolina. She currently splits her time between working in the hematology/oncology clinic and her practice’s Phase 1 research unit. She also works with palliative care and hospice patients.

Dr. Stephen Oh completed his MD and PhD at Northwestern University’s Feinberg School of Medicine in Chicago, Illinois. He went on to complete a residency, fellowship, and postdoctoral fellowship at Stanford University School of Medicine in Stanford, California.

Stephen Oh, MD, PhD, is Associate Professor of Medicine in the Division of Hematology at Washington University School of Medicine. Dr. Oh’s clinical and laboratory research efforts are focused on MPNs. His group investigates fundamental mechanisms driving the initiation, development, and progression of MPNs. Dr. Oh has extensive clinical experience in the diagnosis and management of MPN patients, and has contributed to numerous clinical trials investigating novel targeted therapies for MPN patients.

Dr. Naveen Pemmaraju received his medical degree from the University of Arkansas for Medical Sciences in Little Rock. He completed his internal medicine training in the Osler Medical Program at Johns Hopkins in Baltimore, Maryland. He then completed a hematology and oncology fellowship at MD Anderson Cancer Center, where he is currently an Associate Professor in the Department of Leukemia.

His work focuses on improving outcomes and developing novel therapies for patients with AML, CML, MPN, and BPDCN. Dr. Pemmaraju serves as principal investigator for national clinical trials in MPN and BPDCN, and has helped develop novel targeted therapies for patients with these disorders. He led a multicenter team in a phase 1/2 study for patients with BPDCN that ultimately resulted in FDA approval for the first targeted agent available for this rare leukemia.

A member of the American Society of Hematology, American Society of Clinical Oncology, and American Association for Cancer Research, Dr. Pemmaraju serves on the advisory board for Oncology Times, on the editorial review board of HemOnc Times, and as a reviewer for several medical journals.

He has contributed to more than 200 peer-reviewed articles, and presented his work at national and international conferences.

Esther Schorr is the Co-Founder and Chief Operating Officer of Patient Power. Esther is a skilled global project manager, and has worked with her spouse, Andrew, on patient and family education projects for more than 30 years. Andrew is a two-time cancer survivor (CLL and myelofibrosis) and Esther has supported him in his cancer journey since his initial diagnosis in 1996. Esther is passionate about empowering "care partners" to take an active role in supporting their loved one, and believes that self-education about the medical condition at hand is the first critical step. She communicates with care partner communities across all the cancer conditions that Patient Power supports through monthly e-newsletters and responding personally to comments and questions daily from followers online. Additionally, Esther is spearheading a company-wide initiative to expand coverage of cancer issues that specifically impact underserved patient and care partner communities and is a vocal advocate for addressing issues of healthcare disparities.

Esther holds an undergraduate degree in communications and an MBA, both from UCLA.

Andrea Spica is a patient advocate and 21-year MPN survivor who works to provide support for patients and caregivers living with myeloproliferative neoplasms (MPNs). She was initially diagnosed with essential thrombocythemia (ET) in the late 1990s, which transformed into myelofibrosis (MF) approximately 10 years later. About 2 years ago, she was the recipient of a successful bone marrow transplant.

Andrea gives back to her community by coordinating the North Texas MPN Support Group in Dallas, TX, during which she provides strength, encouragement, and a sense of community to her support group members. Additionally, Andrea has held multiple roles within the MPN Foundation, MPN Info, and Patient Power advocating for MPN awareness, education, and treatment. Andrea is currently retired from a successful career in marketing and holds her Bachelor’s in Business Administration from Texas Christian University.

Tammy Matuska is a Nurse Coordinator in the Hematology & Oncology department at the Washington University School of Medicine in St. Louis, MO. Her duties as a member of the hematology clinic include organizing infusion appointments, scheduling testing, and assisting with complicated paperwork for patients with myeloproliferative neoplasms (MPNs). Tammy goes beyond her responsibilities as a coordinator, working outside of her long hospital hours to contact insurance companies and ensure that her patients have access to proper care.

In addition to being an excellent nurse coordinator, Tammy is a passionate patient advocate. Her dedication to furthering education about MPNs led her to organize an informational dinner for patients and their families. The event was sponsored by the Leukemia and Lymphoma Society and was attended by over 100 people in the MPN community. The first education dinner was so successful that there was demand for a second dinner the following year to answer questions about important topics related to life with an MPN. Tammy hopes to continue patient outreach and start a regular support group for people with MPNs. As she’s seen firsthand, many people living with MPNs are hungry for assistance, community, and information.

When she’s not advocating for her patients or organizing educational events, Tammy and her husband enjoy watching professional baseball, college athletics, and spending time with their five grandchildren.

The Voices of MPN community honors the late David Denny as a leader and positive influence for people living with myelofibrosis (MF). David was a veteran contributor to the MPN Heroes® Recognition Program and was recognized as an MPN Hero in 2015. Diagnosed with primary myelofibrosis in September 2013, David was an avid MPN patient advocate. He was an administrator on the Myelofibrosis Private Support Group and was active on the MPNforum and other support groups. He interacted with the MPN community regularly through daily emails and messages of support. David had also been a leader in organizing a regional support group in Northeast Ohio. Along with elevating awareness of MPNs and the MPN patient journey, David Denny enjoyed spending time with his wife, Lola, his two adult children, and his four grandchildren.

David held a Bachelor of Arts degree in Behavioral Science from Cedarville University and a Master of Divinity degree from the Baptist Bible School of Theology. David served as the pastor of Whipple Ave Baptist Church in Canton, Ohio since 2007. He spent a total of 33 years in pastoral ministry. David also had 13 years of experience in service to people with disabilities. His legacy will be carried on by those who were inspired by his devotion to others affected by MPNs.

Mary Dunkle has dedicated the last 20 years to improving the lives of those affected by rare diseases, during which she held key leadership roles at National Organization for Rare Disorders (NORD). Prior to her recent retirement from NORD, she served as a Senior Advisor with a primary focus on supporting the development of educational resources for patients, medical professionals, students preparing for health-related careers, and the public.

Mary joined NORD in 1999 as Senior Director of Communications and later was promoted to Vice President. She was responsible for the organization’s website, social media, and publications. She was one of the primary NORD editors for a medical textbook on rare diseases published in 2003, the NORD Guide to Rare Disorders. Mary also oversaw NORD’s Research Grants Program and its Patient/Caregiver Information Center for several years.

In 2016, Mary became the Vice President of Educational Initiatives, leading the department responsible for educational resources that included NORD’s Rare Disease Database and its annual conference, the NORD Rare Diseases and Orphan Products Breakthrough Summit.

A continuing theme in Mary’s career is journalism with an emphasis on education and interpreting medical information for a general audience. Before joining NORD, she was affiliated with the Pennsylvania State University for 11 years and served as Manager of Penn State’s award-winning news bureau, as well as Assistant Director of Public Relations for the university’s 22 campuses. She began her career at Penn State as a writer-editor in the office of the Vice President for Research and Graduate Studies.

In addition, Mary has been a Senior Writer for Greenwich (Connecticut) Hospital and Director of Public Relations for Danbury (Connecticut) Hospital.

Andrew Kuykendall is an Assistant Member in the Department of Malignant Hematology at H. Lee Moffitt Cancer Center with a co-appointment as an Assistant Professor in the Department of Oncologic Sciences at the University of South Florida. Dr. Kuykendall focuses his clinical and research efforts on myeloid malignancies with a dedicated emphasis on myeloproliferative neoplasms (MPNs). He has authored numerous publications that have addressed treatment trends, prognostic features, and clinical outcomes of patients with myelofibrosis. He serves as the primary investigator on multiple clinical trials that aim to bring novel therapeutic agents to patients with MPNs. He is a past participant of the American Association for Cancer Research/American Society of Clinical Oncology Methods in Clinical Cancer Research Workshop in Vail, Colorado. Dr. Kuykendall serves as a member of the National Comprehensive Cancer Network (NCCN) Guidelines® for MPNs and Systemic Mastocytosis.

Dr. Kuykendall completed his undergraduate training at Wake Forest University, earned his MD from the University of Florida College of Medicine and completed his fellowship in Hematology and Medical Oncology at the University of South Florida/H. Lee Moffitt Cancer Center & Research Institute, where he served as Chief Fellow.

Julia Olff has been living with myelofibrosis (MF) since 2008. She was first diagnosed with essential thrombocythemia (ET) the prior year after routine blood work showed a high platelet count. Julia developed symptoms of MF over the past 6 years and has been on several treatments. She has been hospitalized several times for acute events, and undergone procedures to manage side effects of MF and treatment.

As a professional, Julia is also steeped in the world of healthcare. As a certified health educator, Julia identifies key patient unmet needs, and provides health education recommendations, and health literate design guidance to healthcare communications clients, and patient and healthcare professional organizations. Julia’s interactions with patients and families as a health educator, and while managing outpatient practices at Memorial-Sloan Kettering Cancer Center, fostered a deep appreciation for the patients’ viewpoint and for improving the patient experience.

Julia’s professional and personal path have led her to become an MPN patient advocate. Julia has served as a virtual webinar panelist, a speaker, a writer, and an advisory board member to MPN patient organizations such as Patient Power, LLC, and MPN Advocacy and Education International. Julia is also active in the MPN social media community and attends as many MPN patient conferences as she can each year to learn the latest research on MF from the experts and connect with other patients.

Julia volunteers as a First Connection Peer Volunteer for The Leukemia & Lymphoma Society (LLS) talking with people newly diagnosed with MPNs. Julia also serves as a family health navigator, researcher, and advocate to several family members with chronic diseases.

Julia recently moved to Jersey City, New Jersey with her husband and two cats. She can see the Freedom Tower in NYC from her apartment window and appreciates being able to walk and take in the sights of her active neighborhood. Julia also enjoys visits from her blended family of five young adult children and her three-year old grandchild. Julia is an avid foodie and food traveler. Her dream is to visit every region of France and Italy in her lifetime.

Maureen Thyne is a physician assistant at Weill Cornell Medical Center in New York City. She received her undergraduate degree from Cornell University in human genetics, her graduate degree in physician assistant studies from St. John’s University, and is also a licensed cytogeneticist. She is originally from Vermont, is an avid Red Sox fan, and now lives in suburban NJ with her Yankee-fan better half and their dog (who she believes is definitely a Sox fan).

After her sixteen-year-old daughter was diagnosed with essential thrombocythemia (ET) in 1997, Celia Miltz decided to take action. She watched her daughter deal with this diagnosis and dedicated her life to raising awareness about people living with MPNs. Celia wanted to raise money dedicated to MPN research, and sponsored a golf tournament that raised upwards of $75,000 in its first year. In addition to more fundraisers through email and social media, Celia started the Friends of ET, a charity designed to provide funding for research into ET. She also served on the board of the MPN Research Foundation for many years, guiding the way Healthcare Professionals, patients, and caregivers understand MPNs. Celia is currently retired and living in Florida with her husband. She golfs frequently and spends as much time as possible visiting with her grandchildren.

Celia is an integral part of the larger MPN community and offers the perspective of a loved one and long-term caregiver. In addition to her fundraising efforts, she is known for her tireless dissemination of MPN information. Today, Celia has far exceeded the amount raised at that initial tournament, raising over $750,000 for MPN research.

Dr. Krisstina Gowin graduated from Chicago College of Osteopathic Medicine in 2009 with a merit scholarship and recognition from the American Women’s Medical Association for outstanding academic achievement. She completed her internal medicine residency at University of Southern California. There she was dedicated to serving the underserved of Los Angeles County and began research into myeloproliferative neoplasms (MPNs) with Casey O’Connell, MD. Dr. Gowin received her hematology and medical oncology training at Mayo Clinic, Arizona. At the Mayo Clinic, she continued her work in MPNs with Ruben Mesa, MD, with a focus on novel therapeutics and patient quality of life (QoL).

In 2015, Dr. Gowin accepted the first of an inaugural "Emerging Leader of the Year" award from CancerCare for her work supporting patients and caregivers of those living with MPNs.

Dr. Gowin has continued her research within the MPN QoL group, a collaborative effort between Mayo Clinic Arizona, Arizona State University, and University of Texas San Antonio, including a clinical trial in yoga to improve MPN symptom burden. In 2017, she completed training in integrative medicine at University of Arizona and is hoping to bring her knowledge of wellness to the MPN patient community.

Dr. Gowin recently joined University of Arizona, where she will focus on MPN care, research, and integrative oncology.

When Barbara earned her PhD and began counseling families of young patients with serious illnesses, she never anticipated that she’d face her own serious diagnosis: polycythemia vera (PV). Today, Barbara draws on her own 20+-year journey with cancer to offer a uniquely compassionate perspective to both the families she counsels as executive director of the non-profit Pediatric Oncology Support Team (POST) in West Palm Beach, Florida, as well as the MPN patients who reach out to her for support.

Barbara is known for her tireless devotion to the MPN community—whether it’s sharing her own experience to help ease the anxiety of an MPN diagnosis, helping families navigate their way to services and other support they need, or speaking to senators and congressional representatives about the challenges and needs of MPN patients. She has also been a long-time volunteer for the Leukemia and Lymphoma Society, where she recently served as a regional board member. Aside from supporting individual patients, Barbara strives to raise awareness about MPNs and to promote more funding for treatment research, which she credits for saving her own life.

Despite considerable challenges over the years, including diagnoses of myelofibrosis and leukemia and receiving a bone marrow transplant in 2013, Barbara forges on in being a much-admired advocate for the MPN community.

I am currently an Assistant in Medicine at Massachusetts General Hospital and an instructor of Medicine at Harvard Medical School in Boston, MA. I was born and raised in Mexico City and moved to the United States for college. I completed my undergraduate degree in biotechnology and psychology at Tufts University and then attended medical school at Mount Sinai School of Medicine in New York. My residency training in internal medicine was at Brigham and Women’s Hospital in Boston, MA. Lastly, I completed my fellowship training in Hematology and Oncology at Memorial Sloan Kettering Cancer Center, in New York, NY. At MSKCC, I was fortunate to have Ross Levine, MD as my mentor. Ross is a leader in the field of myeloproliferative neoplasms research and his guidance was crucial to setting me on the path to become a clinical investigator in the field of MPNs.

I joined the faculty at Massachusetts General Hospital in 2014 and with the outstanding mentorship of doctors Ruben Mesa and Timothy Graubert I have established an MPN clinic at MGH. My goal as a clinician and investigator is to create a comprehensive myeloproliferative neoplasm clinic and research program. The main focus of my research is to conduct clinical trials for patients with MPNs. In addition, I collaborate with basic science investigators such as Ann Mullally, MD, within partnership of the Dana Farber Harvard Cancer Center in research that will allow us to gain better understanding of the mechanisms that lead to the development of MPNs. My ultimate goal is to bring comprehensive care and innovative treatments to my MPN patients.

Note: As a member of the judging panel, Dr. Hobbs agreed to remove herself from voting for any recognition where her own work, institution, or relatives were nominated.

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®.

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.

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. As of 2019, Becca Classen is an Oncology Clinical Nurse Educator at Incyte.

The Voices of MPN community honors the late David Denny as a leader and positive influence for people living with myelofibrosis (MF). He was an MPN Hero in the category of Commitment to the Individual. He was affiliated with two online support groups: the Myelofibrosis Private Support Group and MPNforum.

David was passionately committed to helping people with MPNs overcome obstacles. Through daily e-mails and messages of support, he comforted and guided online members to proper medical resources, financial information, current studies, and other educational material. David not only welcomed people into the MPN community, but he also empowered individuals by helping their voices and concerns be heard. Because he selflessly volunteered countless hours, David helped hundreds of people in the MPN community get the vital information they needed to help manage their MPNs. His legacy will be carried on by those who were inspired by his devotion to others affected by 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.

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 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.

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.

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.

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.

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.

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 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 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 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.

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.