


Congratulations to the 2022 MPN Heroes!
It is a great honor to present the 2022 MPN Heroes. They have each demonstrated a strong commitment to making a difference in the lives of people living with myeloproliferative neoplasms (MPNs). Check out their personal stories and get ready to be inspired!

GHAITH ABU-ZEINAHMD


A passionate, tireless champion for MPN research and treatment, Ghaith Abu-Zeinah, MD, is dedicated to helping people living with MPNs. Dr. Abu-Zeinah makes time to inspire his patients and connect with them as individuals. In addition to the important work of treating patients, Dr. Abu-Zeinah performs cutting-edge research into the science of MPNs.
Outside of the clinic, Dr. Abu-Zeinah has worked with the Cancer Research & Treatment Fund Medical Advisory Board to help evolve the Richard T. Silver, MD Myeloproliferative Neoplasm Center at Weill Cornell Medicine, increase MPN-related referrals, and develop annual patient symposiums for people with MPNs. He lends his expertise to patient-focused videos to break down how MPNs work and how they can impact people. Dr. Abu-Zeinah has also recorded a podcast to examine how living with the daily struggles of an MPN may affect a person’s mindset and psychological well-being.

MAYRA D. ANDÚJAR DELGADOPatient Advocate


Mayra D. Andújar Delgado is a fierce advocate for patients in the MPN community. Her journey began on Cinco de Mayo 2015, after she experienced troubling symptoms. When she was officially diagnosed with myelofibrosis (MF) in November 2016, Mayra made it her mission to learn as much as possible about the rare, chronic blood cancer. She now shares her knowledge to help raise MPN awareness. “We may be a small group, but our voice can make a big difference.”
Mayra’s strong voice in the Latino community and elsewhere in Central Florida can be heard on the radio, social media, in support groups, and at local 5K runs in which she participates. Mayra champions the idea that talking about cancer doesn't make someone a victim or a weak person. On the contrary, it makes them strong for sharing their experiences to help others. She is a guiding light in her community, reminding patients of the ongoing clinical research and abundant educational resources that are available to help support people living with MPNs.

STEVEN APPLEBAUMMD


Hematologist and oncologist Dr. Steven Applebaum trains to run marathons in his free time. This hobby helps him understand that the MPN journey isn’t a simple sprint. It’s a long road with twists and turns that takes a lot of hard work and planning. Dr. Applebaum helps his patients prepare to keep the pace on their own treatment journeys.
Dr. Applebaum takes a holistic and down-to-earth approach with his patients. He makes a point to help people understand complex medical data and how the science relates to their treatment on a human level. In addition to providing important medical insight, Dr. Applebaum takes time to find out about the personal lives of his patients. He is a dedicated MPN Specialist who reminds his patients that living with an MPN does not have to come at the expense of living a full life. Dr. Applebaum believes in finding ownership over the treatment journeys and helping people living with MPNs develop a personal investment in their own health.

JUSTINE HALLAHAN Caregiver


Justine Hallahan knows the importance of normalcy and selfless support when caring for someone with polycythemia vera (PV). When her mother’s life partner, Matt, was diagnosed with PV, Justine came to his aid as a caregiver Monday through Friday when her mother was at work. She was determined to ensure that Matt did not feel defined by his disease. Instead, they would cook together, watch movies, spend time with the family, and enjoy other lighthearted activities.
Justine would often drive Matt to healthcare appointments and run errands together. She was always there for Matt, to laugh together and cry together through the good times and the hardest moments. As Justine continued to take care of Matt, she and her mother learned more about PV from his Healthcare Professionals and the resources available on Voices of MPN. Through appointments and day-to-day activities, Justine took pride in helping Matt to feel like his most authentic self.

NATASHA JOHNSONAPRN


As an Advanced Oncology Nurse Practitioner at Moffitt Cancer Center, Natasha Johnson cares for people living with MPNs. Natasha’s kindness, thoughtfulness, and generosity with her time are a highlight for patients and families at the malignant hematology clinic. After losing her first husband to cancer, Natasha developed insights into the toll that cancer can take on a person’s life.
Natasha’s philosophy for treating her patients stems from her understanding that they can experience a multitude of daily physical and emotional stresses because of their illness. In addition to caring for people living with MPNs, Natasha speaks at conferences and educates other Healthcare Professionals about MPN care, treatment, and research. Natasha is also active with the senior members of her church, taking the time to visit, transport, and cook for elderly individuals.

JESSICA KUHNSPatient Advocate


Jessica Kuhns’ life changed completely when she was diagnosed with an unspecified MPN in 2016. Worried about her family’s future, Jessica decided to meet her challenge with a new mindset: “I can keep being miserable or I can be positive, and being miserable didn’t get me anywhere!” With her positive attitude, Jessica buckled down to take on life with an MPN.
Since her diagnosis, Jessica has joined online support groups and has participated in multiple fundraisers for MPN research and patient support. Jessica shares her own MPN experiences openly on social media because she wants to raise awareness of what it means to live day to day with an MPN. She regularly counsels people dealing with the difficulties created by living with a chronic illness. Speaking from her own experience, Jessica believes that she has had an important impact on the world if she’s helped even one person feel less alone on their MPN journey.

NAVEEN PEMMARAJUMD


Dr. Naveen Pemmaraju is a true leader in the research and treatment of MPNs at MD Anderson Cancer Center. He tries to be the change he wishes to see in the world—reminding patients and colleagues that although MPNs are a group of rare diseases, they are not rare to people who are impacted by them. He wants his patients to know that they are not alone. There are many committed Healthcare Professionals who work tirelessly to advance MPN research and patient care.
Dr. Pemmaraju’s advocacy in the MPN community extends beyond the lab and hospital. He raises awareness of helpful educational material and resources on Twitter because he believes social media enables researchers and clinicians to quickly share the latest MPN information. Dr. Pemmaraju strives to improve the treatment of MPNs, and to elevate the quality of care for his patients and their family members through his advocacy, education, and support activities.

RAAJIT RAMPALMD, PhD


Dr. Raajit Rampal is a hematologist-oncologist at Memorial Sloan Kettering Cancer Center where he specializes in the treatment of MPNs and leukemia. Through his clinical research and a determination to provide the best possible patient care, Dr. Rampal is committed to improving the outcomes of people affected by these blood cancers. He aims to equip patients with the information they need to take an active role in their care.
He also serves as the Scientific Advisor for the MPN Research Foundation, where he further supports the research community by providing insights and new ideas for research that may be clinically relevant. Dr. Rampal gives hope to patients in the MPN community by explaining that there is highly collaborative work underway to advance the science of MPN understanding, care, and treatment.
2022 Judging Panel
An independent judging panel reviews the nominations and selects the recipients for recognition. The committee consists of:

NICOLE KUCINE MD, MS


Nicole Kucine, MD, MS, is a pediatric hematologist/oncologist with a special interest in MPNs in young patients.
She completed her pediatric residency and chief resident year at Robert Wood Johnson University Hospital in New Jersey. Dr. Kucine then completed her pediatric hematology/oncology fellowship at the combined program of Weill Cornell Medicine and Memorial Sloan Kettering Cancer Center in New York. She then completed an additional research year at Memorial Sloan Kettering Cancer Center before starting on the faculty at Weill Cornell Medicine in 2011.
Dr. Kucine received a KL2 award and received her Master’s in Clinical and Translational Science from the Weill Cornell Medicine Clinical and Translational Science Center in 2015 and was awarded a K23 award from the NHLBI/NIH for her work in pediatric MPNs.
Dr. Kucine directs a unique clinical and research program in pediatric MPNs and sees patients from around the United States. She is involved in research evaluating clinical outcomes and treatments for children with MPNs and is also working with colleagues at Memorial Sloan Kettering Cancer Center to study the underlying mechanisms of MPNs in our youngest patients.

AMY LANE Patient Advocate


Amy Lane is a Licensed Clinical Social Worker and Senior Information Specialist in the Information Resource Center at the Leukemia & Lymphoma Society where she has been assisting blood cancer patients and families since 2016.
Amy began her career as an inpatient hospital social worker in the Bronx in the Trauma, ICU, and Burn Units at Jacobi Medical Center. She then spent 15 years at Weill Cornell Medical College where she was the Assistant Director of Grants and Contracts. With her desire to do more clinical counseling she found herself accepting a position with LLS. The choice was also personal as Amy’s brother is a childhood ALL survivor. Now that she is working for LLS, she finds it very fulfilling to have the ability to support patients, caregivers, and their families.
Amy has served on several MPN advisory committees and is involved in various MPN initiatives. She was recognized as a 2021 MPN Hero for her work as a Patient Advocate within the MPN Community. She felt honored to be one of the recipients, as it represents the importance of the collaborations between healthcare professionals, patients, and caregivers.
Amy received her Bachelor’s in Social Work from the University of Pittsburgh and her Master’s in Clinical Social Work from Fordham University. She also has a Master’s in Business Administration from Pace University. She enjoys spending her free time with her 8-year-old son and husband.

JESSICA NEELY Physician Assistant


Jessica Neely is a physician assistant working with people living with myeloproliferative neoplasms at Winship Cancer Institute of Emory University. After graduating in 1998, Ms. Neely worked in the Bone Marrow Transplant Program at Emory Winship Cancer Institute. From 2000 to 2002, she worked with colorectal, breast cancer, and sarcoma patients in surgical oncology at University of Texas MD Anderson Cancer Center. In 2002 she returned to Winship Cancer Institute of Emory in the Department of Hematology where she has been working for the past 20 years – 10 of which have been alongside Dr. Elliott Winton with a focus on MPNs.
Ms. Neely enjoys developing long-lasting relationships with her patients and their families and making herself accessible round the clock to help overcome obstacles her patients face related to their MPNs. Jessica is known for giving each patient the care that she would provide a friend or family member.
Jessica completed her undergraduate degree in Biology at the University of Georgia and went on to attend Emory University’s Physician’s Assistant Program.
Outside of work, Jessica enjoys travelling, running and exercising, spending time with family and especially spoiling her nieces and nephews.

PORTIA PLIAM Clinical Social Worker


Portia Pliam is a sophomore at Wesleyan University, studying Neuroscience and Behavior. She is an active athlete and plays on the Women’s Varsity squash team at Wesleyan. Portia’s MPN journey began 13 years ago when she was diagnosed with ET. She has been involved in the MPN community through guest speaking for MPN Advocacy Education and International and Patient Power. Portia has also interned for MPN Advocacy Education and International during her gap year before college. She is a patient advocate to new families and young adults diagnosed with MPNs. Portia calls the Bay Area, CA, home, but she loves to travel and explore new cities. In her free time, she enjoys hanging out with her friends and family, getting coffee, and reading by the pool.

TAJA SHABAZZ Patient Advocate


Taja Shabazz is a resilient, loving, caring, very determined woman that has a passion to change the world. At the age of 23, at the height of her career, Taja Shabazz was diagnosed with polycythemia vera (PV). During her battle with PV, Taja obtained her degree in Psychology and Criminal Justice.
Taja is a warrior and inspiration to many. Taja has taken what could be deemed as a hidden darkness and has chosen to spread light throughout the world by founding Invisible to the Eye Inc.
As one of the self-identified youngest individuals to be diagnosed with PV in the country and as the founder of Invisible to the Eye Inc., Taja’s goal is to find a cure for MPNs, and make that which is “Invisible to the Eye” seen by many.
We Honor the 2021 MPN Heroes!
You nominated them for making a difference in the lives of people living with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Click below to learn why the 2021 MPN Heroes were acknowledged for their commitment to MPN care and to hear their personal stories.

JEFF BUSHNELL Caregiver


Jeff Bushnell may have spent 30 years in the military, but today his service is to the MPN community. His connection to patients and families affected by myeloproliferative neoplasms (MPNs) stems from his own role as a caregiver. His wife, Summer, lives with myelofibrosis (MF).
Since Summer’s diagnosis, Jeff has made it his mission to learn everything he can about the disease. “I keep up-to-date and have a pretty strong knowledge of what’s going on in the MPN community because I’m interested in it—obviously because I want to see the best care for Summer.”
It is that same passion and drive for Summer’s well-being that led Jeff to become an MPN Network Manager at the Patient Empowerment Network (PEN). Together, he and Summer work diligently to write and record videos and other helpful resources to empower those along their own MPN journeys. Through various media, they have helped more than 140,000 patients and caregivers get vital information and tools for making informed care decisions.

RONALD HOFFMAN MD


Dr. Ronald Hoffman’s dedication to translational research is all about making a difference in the lives of patients with myeloproliferative neoplasms (MPNs). With an extensive background in laboratory-based stem cell research as well as hands-on care of patients with hematological malignancies, Dr. Hoffman has a passion for scientific investigation that spans nearly 50 years.
His unique position at the Icahn School of Medicine at Mount Sinai Medical Center allows him to concentrate on the scientific and regulatory duties as a principal investigator, while collaborating on a daily basis with his peers.
For Dr. Hoffman, “All the basic science is geared toward improving the lives of patients with MPNs, and I hope in my lifetime that will make a big impact.”
Dr. Hoffman is a past editor of Experimental Hematology, was president of the International Society of Experimental Hematology, and was president of the American Society of Hematology (ASH), demonstrating his skill for coordinating the activities of highly qualified investigators who comprise the Myeloproliferative Disorders Research Consortium.

NICOLE KUCINE MD


Dr. Nicole Kucine serves as an advocate for younger patients and their families within the small, pediatric myeloproliferative neoplasm (MPN) community. Her pediatric hematology-oncology practice at Weill Cornell Medicine serves as her home base where she is dedicated to helping parents navigate the unknowns with compassion and concern.
She focuses her clinical interests on complex pediatric medical issues, including MPNs. She is an Associate Professor of Clinical Pediatrics at Weill Cornell Medicine and Associate Pediatrician at NewYork-Presbyterian/Weill Cornell Medical Center.
Dr. Kucine’s research and experience with children around the world brings reassurance that despite challenges, the goal for her patients is to “have the most normal life possible.” Although MPNs are rare in pediatric patients, she provides words of encouragement, “Your kid is going to grow up, and we’re going to help them do that.”

AMY LANE Patient Advocate


Amy Lane’s recognition as a 2021 MPN Hero has brought her full circle. Having a sibling diagnosed with blood cancer in the 1970s, she understands firsthand the emotional and financial challenges that accompany a myeloproliferative neoplasm (MPN) diagnosis.
Amy joined the Leukemia & Lymphoma Society (LLS) in 2016 as an Information Specialist and has been dedicated to providing one-on-one assistance to patients and caregivers around the world ever since. Key to her work is her compassion, kindness, and calm, providing callers with a source of comfort and hope. “A lot of listening goes into what I do. Many patients are newly diagnosed, and they don’t even know where to start.”
Amy’s impact is reflected through the many thank you notes she has received for providing patients and caregivers up-to-date resources and information about MPNs.

JOHN MASCARENHAS MD


Being an MPN Hero is nothing new for Dr. John Mascarenhas. He was nominated in 2013 as one of the first MPN Heroes, and his dedication and relentless work for patients with MPNs is recognized again this year.
Among patients and colleagues, Dr. Mascarenhas continues to be a standout among physicians. He exemplifies this through an optimistic and forward-thinking perspective. “My fulfillment has evolved over time. I’ve always enjoyed the direct patient contact, but I’ve also come to really get excited by the implications of the advances we’ve made, and the potential to help many more people than I will ever meet down the line.”
At the Icahn School of Medicine at Mount Sinai Medical Center,
Dr. Mascarenhas devotes endless hours to creating breakthrough research that helps ensure each of his patients receives optimal care.
An exemplary clinical investigator and clinician, Dr. Mascarenhas is focused on helping improve possibilities for patients with MPNs, working hands-on to provide insights from ongoing MPN research.

JESSICA NEELY Physician Assistant


In her role as a physician assistant at the Emory Winship Cancer Institute, Jessica Neely gives each of her patients living with myeloproliferative neoplasms (MPNs) the care and respect they deserve. Though she works from 9 to 5, there’s no limit to the time she’s willing to give to her patients.
Jessica is often accessible round the clock to help patients overcome obstacles related to their MPNs. From information about their disease, to helping with financial resources, Jessica addresses each patient concern in a timely and thoughtful manner. Jessica is known for giving each patient the care that she would provide a friend or family member.
By listening closely and understanding a patient’s perspective, Jessica is able to thoughtfully address patient concerns. “I try to make them a little less frightened about what to expect and what they’re going through.”

JOSEF PRCHAL MD


A professor in the Division of Hematology and Hematologic Malignancies at the University of Utah, Dr. Prchal is dedicated to researching myeloproliferative neoplasms (MPNs) and caring for patients with MPNs.
As a physician scientist, Dr. Prchal goes as deep as possible into the science of MPNs. In his vast research, Dr. Prchal focuses on trying to understand the molecular basis of blood diseases to discover underlying mutations and how they function.
His work as a lead investigator in MPNs in the early 2000s led directly to the discovery of the JAK2V617F mutation by William Vainchenker and others in 2005. His ongoing interest and dedication are likely to continue to make a lasting imprint on the science of MPNs.
Dr. Prchal’s passion for research stems from his desire to break convention. “When you find something unusual, it opens domains to look at unusual things. I find it very exciting.”
When not conducting research, Dr. Prchal spends his time in clinical trials at the Huntsman Cancer Center treating patients with MPNs. He has been named a Huntsman Cancer Institute Investigator, and is a member of the Cell Response and Regulation Program, and the Imaging, Diagnostics, and Therapeutics Program.

ANITA RAJASEKHAR MD


Hematologist/oncologist Dr. Anita Rajasekhar is driven to give patients living with myeloproliferative neoplasms (MPNs) the type of care that improves their lives. Although she is fascinated by the complexity of MPNs, her patients are her real motivation. “What inspires me to get up and do this on a day-to-day basis, it’s about the people. You want to make their lives better in any way you can.”
A busy clinician and clinical investigator at the Division of Hematology & Oncology at the University of Florida, Dr. Rajasekhar is also an Associate Professor who helps train the next generation of leaders in hematology/oncology. This year, she has the honor of being an Education Program Co-Chair for the 2021 American Society of Hematology (ASH) Annual Meeting, helping to oversee programs and materials for non-malignant hematology.
It’s the patient care aspect of her work, however, that has led her to be recognized as an MPN Hero. Her patients appreciate her consistent, ongoing commitment, as she routinely demonstrates genuine care and concern for helping them manage their MPNs.
2021 Judging Panel
An independent judging panel reviews the nominations and selects the recipients for recognition. The committee is made up of:

MICHELE COURI MD, FACOG, ABIHM


Dr. Michele Couri completed her MD at the University of Illinois College of Medicine. She completed her residency in Obstetrics and Gynecology at OSF Saint Francis Medical Center in Peoria, Illinois. She completed a Fellowship in Integrative Medicine through the University of Arizona. She is a Clinical Associate Professor at the University of Illinois College of Medicine in Peoria and is in private practice specializing in Gynecological health, minimally invasive Gynecologic surgery, wellness, and lifestyle medicine. She and her husband Tim are the proud parents of six children.
Dr. Couri is very familiar with MPNs as she was diagnosed with PV in 2010 that progressed to MF in 2020. She underwent a successful stem cell transplant in November 2020. She is the Founder and President of MPN Peoria, a non-profit 501(c)(3) organization whose mission is to raise awareness and funding for MPNs. MPN Peoria was launched in February 2019. To date, MPN Peoria has raised over $200,000 for MPN research. Dr. Couri received the 2020 MPN Heroes award and is humbled to share this honor with all the prior recipients.

ANGELA FLEISCHMAN MD, PhD


Dr. Angela Fleischman is a physician-scientist investigating hematologic malignancies. She integrates her research with the clinical care of patients with these diseases.
Fleischman's longstanding interest in blood cell development began during her PhD graduate studies at Stanford. After completing her MD and PhD at Stanford, in 2005 she moved to Oregon Health & Science University (OHSU) for her internal medicine residency and medical oncology fellowship.
She joined the University of California, Irvine in July 2013 to develop her independent laboratory group focusing on the pathogenesis of myeloproliferative neoplasms (MPNs). Her laboratory focuses on the role of inflammation in MPNs. Her overarching research goal is to identify what drives disease initiation in MPNs and to ultimately translate her scientific discoveries into therapeutic benefits for MPN patients.

MADELEINE HENRIQUEZ PA-C


Madeleine Henriquez is a physician assistant (PA) who graduated from the University of Texas – Medical Branch in Galveston, Texas. Shortly after graduation, she joined the Leukemia Department at the University of Texas MD Anderson Cancer Center where she has worked collaboratively with Dr. Prithviraj Bose to care for MPN patients. Over the past 6 years, she has developed a passion and enthusiasm for this unique patient population. She has thoroughly enjoyed fostering strong, long-lasting relationships with her patients and their caregivers.
Madeleine believes that patient education is the foundation for quality care and positive clinical outcomes. Her goal is to empower her patients to “take charge” of their diagnosis. In addition, she feels that mental health and physical well-being are strongly intertwined, so she promotes this amongst her patients and peers! Madeleine gives many lectures on a local and national level regarding myeloid malignancies with a focus on MPNs. She has partnered with various national media outlets such as MPN Updates through JADPRO to discuss the importance of mental health in patients with MPNs.
In her spare time, Madeleine enjoys spending time with her family. Her hobbies include cooking (her newest venture is toddler-friendly meals), running, mothering her plants, crocheting and trying all the delicious restaurants that Houston has to offer.

RAMI S. KOMROKJI MD


Rami S. Komrokji, MD, is a clinical investigator at H. Lee Moffitt Cancer Center. His research focus is on phase I and II clinical trials in Myelodysplastic syndromes (MDS) and acute myeloid leukemia. He is the lead clinical investigator for the MDS Program at the Cancer Center. He has conducted several translational clinical trials working with the program’s basic scientists. He has also developed the MDS database, which is one of the largest in the world. Finally, he serves as the Moffitt Cancer Center PI for the MDS Clinical Consortium, which is an agreement between 6 of the largest MDS Programs in the country for conducting clinical trials in MDS. He serves as a member on the MDS NCCN committee and on the NIH MDS natural history study committee. His work in the field of MDS, specifically conducting clinical trials and outcome research, is well recognized internationally and he has collaborated with all the major MDS programs worldwide.

NICK NAPOLITANO Patient Advocate


Nick Napolitano, originally from Staten Island New York, is a Regional Tax Marketing Leader for PwC in New York. He is also the Staten Island Community Committee Chair for the 2021 Light The Night campaign. Nick was diagnosed with polycythemia vera (PV) in 2016. The diagnosis, although initially very tough for Nick and his family, is now viewed by Nick as a great gift as it has allowed him to find his true calling as a patient advocate.
Since his diagnosis, he has dedicated himself to educating others and raising awareness of MPNs. Nick has shared his story through a documentary titled “The Unknown.” In it, he discusses his determination to help others meet the challenges of living with an MPN. Nick also partnered with advocacy groups to create and share coronavirus coping strategies for patients with MPNs. He has appeared in numerous webinars and virtual meetings, often discussing topical issues with pioneers in the MPN field. He has been working with LLS for the past 3 years and was a featured patient hero at the 2020 Leukemia & Lymphoma Society’s Light the Night event. He was also recently honored for his advocacy work by CURE Magazine, by being named a 2020 MPN Hero.
Nick knows how important it is to raise awareness and continue to have a drive towards research and funding for all blood cancer patients worldwide. He credits his strong family support and the invaluable and selfless work of advocacy organizations for having a positive influence on his journey with PV. Nick is an avid sports fan and in his spare time coaches his sons' baseball teams. He currently resides in Westchester County with his wife Kara and two sons Nicholas and Jake.
We Honor the 2020 MPN Heroes!
You nominated them for making a difference in the lives of people living with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Click below to learn why the 2020 MPN Heroes were acknowledged for their commitment to MPN care and to hear their personal stories.

NICK CALLAHAN Caregiver


Nick Callahan knows what it takes to orchestrate optimal support for someone living with essential thrombocythemia (ET). He’s been a best friend and committed caregiver for his significant other and professional violinist, Toula Bonié, since they met in 1991. Nick sees his role largely as a facilitator. Day in and day out, he does whatever is needed to help Toula overcome the challenges of ET—grocery shopping, cooking, running errands, and walking their dog. All while working full-time.
Nick’s specialty is what they lightheartedly call “princess service.” That’s when he drives Toula directly to the back stage door for her concerts with The Florida Orchestra. “Sometimes the little things are the big things that really make a difference. It’s about making everybody’s life better and easier.” Toula is beyond grateful for Nick’s selfless patience and kindness. She is keenly aware that his devoted caregiving has a huge impact on her life and her ability to enjoy it. Together, Nick and Toula define what it is to have a steadfast, strong relationship built on mutual admiration, respect, and making the most of life with ET.

MICHELE A. COURI Patient Advocate


Michele A. Couri is a dedicated hiker who enjoys the tranquility of nature as a way to unwind and get some exercise. She’s also a full-time practicing OB/GYN who is living with myelofibrosis (MF). She was originally diagnosed with polycythemia vera (PV), but her condition transformed to MF. Michele’s interest in becoming an MPN patient advocate was awakened when she befriended the late Bob Rosen, founder of the MPN Research Foundation. To honor Bob’s legacy, Michele created a not-for-profit organization called MPN Peoria. Their goal is to lead fundraising efforts to support research and raise awareness of MPNs.
MPN Peoria gave Michele the opportunity to combine her love of hiking with fundraising for MPNs. In two years, Michele’s organization has raised $150,000. The 2020 MPN Peoria Hike was virtual, due to COVID-19. Yet it surpassed the previous year’s fundraising amount by about $30,000! In addition, Michele maintains the MPN Peoria Facebook and Instagram pages, working tirelessly to make a difference for patients with MPNs. When she is not advocating for people with MPNs, Michele stays active by biking, kayaking, and spending time outdoors with her husband and six children.

SUMMER GOLDEN Patient Advocate


Summer Golden is an MPN Network Manager for the Patient Empowerment Network (PEN). Because she is living with myelofibrosis (MF), she deeply understands how patients and caregivers feel on their journey with myeloproliferative neoplasms (MPNs). Summer infuses her work with compassion—and a well-honed sense of humor developed during her years in the theater. Humor has been Summer’s way of coping with MF. She even performed a comedy routine about her diagnosis. Why? “Everyone deals with this diagnosis differently, so whether it’s through education, support, or in my case, comedy, it’s important to face your disease head on and know you are more than a diagnosis.”
In her role at PEN, Summer has made a positive impact on thousands of patients in the MPN community through e-newsletters, program development, PEN-Powered Activity Guides, and online MPN support groups. Summer works to enhance patient health literacy, enabling shared decision-making and providing educational resources that empower patients and caregivers at every step of their cancer journey. When she is not advocating for the MPN community, Summer and her husband, Jeff, run the North Park Vaudeville & Candy Shoppe—San Diego’s “smallest, sweetest theater” and home to the STARS acting program for people with disabilities.

RAMI S. KOMROKJI MD


Rami S. Komrokji is currently the Vice Chair of the Malignant Hematology Department and Lead Clinical Investigator for the MDS Program at the Moffitt Cancer Center in Tampa, Florida. U.S. military veterans with myeloproliferative neoplasms (MPNs) know him in another role: the compassionate MPN expert who goes to extraordinary lengths to help them get access to appropriate care.
While at the University of Cincinnati, Dr. Komrokji reactivated the American VA Hematology/Oncology Association, serving at various times as president and vice president. Because of his service to the VA, Dr. Komrokji demonstrates a true understanding of what the veterans and other patients go through on their MPN journeys. Dr. Komrokji shares his expertise with the broader MPN community as an author and co-author of more than 200 peer-reviewed manuscripts, 20 book chapters, and 300+ abstracts about blood cancers. He also participates in a variety of educational webinars about MPNs with numerous patient advocacy organizations. At Moffitt, Dr. Komrokji’s research interests are in outcomes research in hematologic malignancies with a focus on myeloid neoplasms. “This is one of the largest centers in terms of myeloid research. We see a large number of patients and conduct clinical trials. I run a research meeting every week. There’s a lot of activities here. I really enjoy it.”

NICK NAPOLITANO Patient Advocate


Nick Napolitano’s transformation into becoming an outspoken advocate for people with myeloproliferative neoplasms (MPNs) was a gradual development. It began in 2016 when a routine physical revealed he had polycythemia vera (PV). Initially, he was not comfortable talking about his symptoms or the disease. Then he and his wife had a conversation that would change his outlook. Nick decided to take action. He started eating healthier, working out more consistently, and connecting with others in the MPN community. “I have it, and I’m going to do some good with it.”
He has since dedicated himself to educating others and raising awareness of MPNs. Nick has shared his story through a documentary titled “The Unknown.” In it, he discusses his determination to help others meet the challenges of living with an MPN. Nick also partnered with Patient Power to create and share coronavirus coping strategies for patients with MPNs. He has appeared in numerous webinars and virtual meetings, often discussing topical issues with pioneers in the MPN field. He has spoken at MPN conferences and has been a featured participant at his local Leukemia & Lymphoma Society’s Light the Night event. He credits his dad for having a positive influence on his journey with PV. Nick knows how important it is for patients with an MPN to be able to connect with others who have a similar experience. That’s why he plans to continue his MPN patient advocacy efforts for years to come.

CARMEN ORRICO Patient Advocate


Carmen Orrico has a profound desire to help raise awareness about essential thrombocythemia (ET) among other young people with the disease. She was diagnosed with the rare condition at age 17, which is unusual because ET is most common in adults over 50. When she researched the disease, she didn’t find information that could help her connect with other young patients. “I felt a little bit alone. I didn’t know a lot of people my age getting diagnosed. I felt there wasn’t a place for me to go and connect with other people.”
Seeing an unmet need, Carmen created an Instagram page about ET. Her objective is to bring greater awareness to the condition and share resources that may help others overcome obstacles presented by ET. She and other young adults all over the world now share stories and compare notes about managing ET. Today, Carmen is in college. She also opened a small makeup studio called Blended by Carmen. She uses her artistic talents to return goodwill to her hometown community that supported her in her journey. Carmen is a 2020 MPN Hero because she became a spokesperson for her generation, establishing an ongoing social media dialogue offering connection, familiarity, and friendship.

DAVID S. SNYDER MD


David Snyder is Associate Director in the Department of Hematology & Hematopoietic Cell Transplantation at the City of Hope Comprehensive Cancer Center in Duarte, California. Dr. Snyder is nationally acclaimed in the field of myeloproliferative neoplasms (MPNs) as an expert in stem cell transplantation for managing MPNs, chronic myeloid leukemia (CML), and other blood disorders.
Dr. Snyder is a caring physician with a hectic schedule seeing patients, writing scientific papers, and collaborating with colleagues. During his 43+ years of medical practice, he has advanced the science of MPNs through his research and clinical trials. He is frequently asked to speak at national medical seminars to share his encyclopedic knowledge of MPNs. He also emphasizes education as a cornerstone of patient empowerment for the MPN community. Whether through patient advocacy forums or talking one-on-one with patients, Dr. Snyder has helped people with MPNs live with hope, strength, and courage. MPN patients and Healthcare Professionals alike are grateful for Dr. Snyder’s leadership and wish him well as he plans to retire, capping a distinguished career researching ways to improve care for people with MPNs.

HON. COL. DR. SAMUEL VERNIERO, JR. Patient Advocate


Samuel Verniero, Jr., has had a life of distinction in service to others as a United Nations diplomat, honorary Kentucky Colonel, and leader in the state of Georgia for people with disabilities. He speaks with authority for people with disabilities because he knows what it’s like. Sam is living with polycythemia vera (PV) compounded by multiple serious medical conditions. He uses his public platform and contacts on various boards and commissions to “push really hard” to raise awareness of myeloproliferative neoplasms (MPNs). He and his fiancé, Lanora, were approached by two motion picture companies that want to tell his story. Sam is excited that these opportunities can make a greater impact for the MPN community by reaching a nationwide and maybe even global audience.
Sam is a testament to the indomitable courage needed when trying to change the hearts and minds of people unfamiliar with MPNs. Several strokes have disabled his body but not his effusive personality or spirit. He continues to work for change and voice the need for additional MPN research that could improve the lives of patients with MPNs.
2020 Judging Panel
An independent judging panel reviews the nominations and selects the recipients for recognition. The committee is made up of:

HEATHER BOWERS


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.

STEPHEN OH


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.

NAVEEN PEMMARAJU


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


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


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.
We Honor the 2019 MPN Heroes!
You nominated them for making a difference in the lives of people living with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Click below to learn why the 2019 MPN Heroes were acknowledged for their commitment to MPN care and to hear their personal stories.

TAMMY MATUSKA BSN, RN
"I feel like I’ve finally found my passion working with the MPN community."


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.

CANNON McMULLIN Patient Advocate
"Being a hero…is trying to help other people work through having ET and find a cure."


Cannon McMullin was diagnosed with essential thrombocythemia (ET) at 8 years old and has now been living with his disease for over three years. The youngest child in his family, Cannon lives with his parents who do their best to help him live a normal life. Cannon travels regularly for testing and check-ins with his pediatric oncology care team and keeps a positive attitude when dealing with his diagnosis and the difficulties involved in his care. As part of an ongoing study, Cannon understands that although the research he's contributing to may not help him directly, the value of this study may help other people with ET in the future. As Cannon says, “I have to be a part of this if it can help someone, anyone.”
Cannon enjoys playing point guard for his school’s basketball team, kayaking with his family, and playing video games. He demonstrates incredible courage, refusing to let his diagnosis define his life. Cannon is an example to everyone with a rare blood cancer and a reminder to live each day to its fullest.

ROBYN SCHERBER MD, MPH
"…There’s no better feeling than to see a patient, know that they’re struggling with something, but know that I have the opportunity to be able to intervene on that."


Dr. Robyn Scherber is a clinician and hematologist in San Antonio, TX, where she actively works to advance science devoted to myeloproliferative neoplasms (MPNs). Dr. Scherber is a tireless researcher who helped develop the MPN Symptom Assessment Form (the MPN-SAF), which is used to evaluate patients in clinical trials, hospital intake, and various other medical settings. Her invaluable research into chronic MPN-related fatigue and the symptom burden of MPNs has helped thousands of people quantify their symptoms related to MPNs. Dr. Scherber is focused on empowering people living with MPNs to track their own symptoms and evaluate their experiences with their healthcare team. Dr. Scherber has also been a part of the Mays Cancer Center family education program to share her knowledge with the families of people with MPNs. She is nationally recognized as a medical expert in MPNs and regularly takes part in educational activities and passes on her understanding of MPNs by speaking at conferences, such as the MPN Advocacy & Education International’s Women & MPN Conference. As of 2020, Dr. Scherber is the Senior Director, Medical Affairs at Incyte and Assistant Professor of Medicine at The University of Texas Health Science Center at San Antonio.

KURT SCHROEDER RN
It makes me feel good to help the patients understand their disease.


Kurt pushes for inclusive wording in protocols and less-restrictive monitoring in studies in order to include more patients in important research studies. He makes creative suggestions to help every patient comply with their individual care plan within the study requirements. Kurt’s advocacy doesn’t stop at the hospital doors—he gladly hands out his cell phone number and takes calls during his days off to ensure that his patients find the answers and care they need. Kurt has an innate drive to be present and supportive for his patients, ensuring that he goes above and beyond to help however possible.

NATALIE CATALANO CAREGIVER
I was …trying to connect the pieces between the specialists, and to give her any strength I had.


Natalie Catalano’s daughter, Carmen, was diagnosed with essential thrombocythemia (ET) at 17 years old. During the long road to identifying Carmen’s condition as a rare blood cancer, Natalie persistently advocated for her daughter’s care. Even though the diagnosis process took years to figure out, she supported her daughter every step of the way. On the journey towards the correct diagnosis, Natalie was an unrelenting partner for her daughter. With her steadfast care and attention, Carmen found her mother to be a continual source of strength and inspiration. After the diagnosis, Natalie devoted herself to Carmen’s well-being. She took on all of the physical and emotional work associated with being a caregiver to someone with a rare blood cancer, and made it a point to help Carmen maintain dignity and grace while in the hospital. Natalie is addressing her daughter’s needs with unending patience and a heroic level of commitment.
Natalie’s family is active and adventurous and goes out of their way to make sure Carmen isn’t defined by her diagnosis as a person living with a myeloproliferative neoplasm (MPN). In order to include her daughter, Natalie makes sure to connect with her and is prepared to be an attentive care provider anywhere—especially now that Carmen is in college. Natalie embodies the qualities of an MPN Hero with her faithful care and steadfast attentiveness to her daughter.

MADELEINE M HENRIQUEZ PA-C
I spend a lot of time sitting there breaking down the disease to them, empowering them to understand the disease for themselves


Madeleine Henriquez is a physician assistant in the Leukemia department at MD Anderson Cancer Center in Houston, TX, who decided to take on additional training as a mental health first aid professional. Caring for patients living with myeloproliferative neoplasms (MPNs), Madeleine realized that there was a gap in care—the symptom burden of their diseases sometimes created mental health–related issues that could go undiagnosed and untreated. Madeleine decided to step up and take on the extra duties related to patient mental health. As part of the inaugural class of mental health first aid workers, she is treating an often overlooked psychological aspect of living with a rare blood cancer.
A Houston native, Madeleine is married to her high school sweetheart and enjoys yoga, running, and gardening in her free time. Madeleine’s work colleagues agree that she is fulfilling a vital role in patient care and is helping patients with MPNs at MD Anderson Cancer Center cope with the realities of their diagnosis. She has helped to lift the stigma on mental health and furthered a wholesome approach to treatment of patients with rare blood cancers.

IRUM KHAN MD
…Every patient comes from a very different place and a different set of circumstances, which we, as physicians, have to recognize when we take care of them


Dr. Irum Khan, a specialist in myeloproliferative neoplasms (MPNs) and related diseases, has dedicated herself to helping two groups of marginalized patients: people living with MPNs and people without resources to independently manage their own care. In her practice, Dr. Khan works with social workers, charitable organizations, and medical foundations to help her patients manage hidden costs of extended care like transportation and nutrition. Sometimes the cost of bus fare can make the difference between a person receiving care or suffering due to lack of funds. Dr. Khan is working tirelessly to make sure every person living with an MPN, regardless of money or status, receives the care they require.
Dr. Khan also makes it a point to pay attention to the psychological toll of MPNs in her patients. Moving beyond symptoms that can be difficult to track or measure, Dr. Khan is always committed to delving into issues beyond the symptoms people might expect from the diagnosis of an MPN. The symptom burden associated with a rare blood cancer can lead to a host of mental health issues and Dr. Khan has made it her mission to help patients manage not only their symptoms, but also any psychological effects such as depression and anxiety.
When she isn’t aiding homeless, incarcerated, or underinsured patients, Dr. Khan spends time with her family. She is also active in the local Leukemia and Lymphoma Society and speaks regularly at educational events for patients living with an MPN and their families. Dr. Khan’s courage in helping people who need care and lack means is a shining example of what it means to be an MPN Hero.

LAURA C. MICHAELIS MD
…I’ve been really humbled over the course of the last 15 years with meeting and interacting with these patients.


Dr. Laura Michaelis, a specialist in hematology and oncology, has a mission statement to live up to when she’s treating patients: “deliver superb care in a compassionate, individualized manner.” As someone caring for people living with myeloproliferative neoplasms (MPNs), Dr. Michaelis goes above and beyond to offer outstanding healthcare in and outside of the clinic. Dr. Michaelis is a proponent of her hospital’s 24-hour transfusion and evaluation access point—a kind of emergency room designated specially for people with rare blood disorders—providing an excellent standard of round-the-clock care for hematology/oncology patients.
Dr. Michaelis is also a firm believer in passing along her expertise. According to Dr. Michaelis, “the biggest things I can do as a doctor are: help, communicate, and teach.” In order to carry her mission statement and share knowledge outside of hospital walls, Dr. Michaelis regularly speaks to MPN patient support groups to provide important information and answers in a more personal setting.
Outside of her medical practice, Dr. Michaelis is an avid baseball fan, painter, and traveler. An experienced news reporter before she decided to dedicate herself to medicine, Dr. Michaelis serves as Editor-in-Chief for the American Society of Hematology official member news magazine, Hematologist.
2019 Judging Panel
An independent judging panel reviews the nominations and selects the recipients for recognition. The committee is made up of:

DAVID DENNY
Patient Advocate


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
Patient Advocate


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
MD


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
CHES, Patient Advocate


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
RPA-C


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).
We Honor the 2018 MPN Heroes!
You nominated them for making a difference in the lives of people living with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Click below to learn why the 2018 MPN Heroes were acknowledged for their commitment to MPN care and to hear their personal stories.

CELIA MILTZ Caregiver


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.

JADEN PERSAUD Caregiver


Jaden Persaud’s mother, Jessica, has given her son a treasured family motto: "Blessings are not meant to be kept, they’re meant to be passed on." In 2015, Jessica was diagnosed with an unclassified, non-specific MPN, and, inspired by his mother’s courage, Jaden found the strength to act and continue the family tradition of passing blessings along. Jaden, who is now 12 years old, has devoted himself to taking care of his mother and contributing to their MPN community.
After personally experiencing how his mother's MPN affected her and their home life, Jaden was inspired to create a charitable organization named Stuffies for Survivors. He and Jessica also participate in the Leukemia & Lymphoma Light the Night Walk. To date, with support from local businesses, Jaden’s school, and individual donations, Jaden and his family have raised more than $2,000 for blood cancer research.
Jaden’s journey to spread MPN awareness has inspired a college student to document his efforts as part of an academic project. Their collaboration will help share Jaden’s story with others in the MPN community and further his efforts to fulfill the family motto by sharing the blessings he has.

JEAN DIESCH Patient Advocate


Jean Diesch’s philosophy is "Having a rare disease is not so rare when you have one!" It’s a running thread throughout her efforts to spread fundamental information about MPNs to a wider audience. Jean was diagnosed with polycythemia vera (PV) in 2009. Since discovering that she had been living with a rare, chronic blood cancer, Jean has devoted herself to patient advocacy.
Jean founded a support group to make sure no one else has to struggle to find important information and expert advice about MPNs. She regularly invites experts to speak to her support group about topics relevant to the MPN community. Jean is also a mentor through the Cleveland Clinic’s 4th Angel Mentoring program, where she helps patients find resources and offers support for people living with the day-to-day realities of a rare blood cancer.
In addition to her advocacy, Jean raises money for MPN and cancer research. Jean is a regular attendee of the Light the Night Walk in Pittsburgh, where she has helped raise over $10,000 for the Leukemia & Lymphoma Society.

LORI JEMISON RN


Lori Jemison is the Clinical Coordinator for the malignant hematology team at Froedtert Hospital. She works tirelessly to help people living with MPNs and runs a support group that welcomes anyone who copes with the daily difficulties associated with those diseases, from caregivers to newly diagnosed patients to post-transplant patients and beyond. Lori’s advocacy includes regular surveying of her support group to find out what kind of topics they want to learn about. She lines up expert speakers to educate the group on relevant topics and MPN developments and summarizes that information in a follow-up email for those who could not attend.
Lori has organized an educational symposium about multiple myeloma and participates in the local Light the Night Walk, which benefits the Leukemia & Lymphoma Society. She even created an in-hospital Light the Night Walk for patients who are too ill to attend in person!
In addition to developing useful programs for patients and caregivers, Lori goes above and beyond for the people she supports. Lori will hand-deliver useful resources, show up with birthday cakes, and has even traveled over 100 miles to obtain a sick patient’s favorite food.

ANGELA FLEISCHMAN MD, PHD


Working from her lab on the campus of University of California, Irvine, Dr. Angela Fleischman investigates the disease development of MPNs. She is committed to researching many different aspects of MPNs through the samples she collects from bone marrow biopsies stored in the Hematologic Malignancy Biorepository. For example, she is intent on discovering the mechanism that drives chronic inflammation in MPNs, evaluating the healthy bacteria that live in and on the body and their relationship to MPNs, and undertaking other important areas of MPN-focused research.
In addition to clinical research, Dr. Fleischman is engaged with developing platforms to help people learn more about MPNs and MPN-related resources. Dr. Fleischman organizes and helps maintain the We Are MPN website, an online hub for MPN clinical trials, educational resources, and dates for upcoming MPN-focused events. Dr. Fleischman has helped organize educational conferences about MPNs and hosts quarterly meetings about topics related to life with a chronic blood cancer.
When she’s not doing research or sharing educational resources about MPNs, Dr. Fleischman runs marathons. She is currently trying to start a family bio-registry to examine the genealogical and generational development and occurrence of MPNs.

BOB ROSEN Patient Advocate


Bob Rosen was diagnosed with polycythemia vera (PV) in 1997. After his diagnosis, Bob devoted himself to furthering scientific research focused on MPNs. Bob formed the MPN Research Foundation, which has raised millions of dollars for MPN research and discovery since its creation in 1999. According to a fellow activist in the MPN community, Bob was "instrumental in growing focus on the MPN family of blood diseases among the blood-cancer related scientific community. The establishment of the Scientific Advisory Board with the leading MPN scientists in the world was a huge step forward."
Even up until he passed away in early 2018, Bob dedicated a significant portion of his time to MPN activism. When he began his foundation, it operated on a shoestring budget. Bob was a product of the Chicago real estate market and used both his business acumen and hard-charging work ethic to grow the foundation into one of the world’s leading forces for MPN research. Given his dedication and perseverance, it is hard to accurately measure Bob’s overall impact on the MPN community. He is survived by his family who continue to honor his memory, his legacy, and his contributions to furthering medical investigation into rare blood cancer research.

RICHARD FRENCH Caregiver


Richard French’s daughter Amber was diagnosed with essential thrombocythemia (ET) in 2003. Even though, prior to Amber’s diagnosis, Richard had never heard of this class of rare blood cancers, he discovered that hundreds of thousands of people were battling MPNs. A broadcast professional with decades of experience in developing professional communications, Richard wondered how he could help elevate awareness about MPNs in the general dialogue about cancer research. As he explains: "you couldn’t hear the MPNs over the other cancers."
Richard used his connections in the world of broadcasting to raise the profile of MPNs on a national scale. He crafted a specially designed public service announcement (PSA) about people living with MPNs and had it professionally produced and edited for free, thanks to his broadcast connections. Richard then developed a database of 840 TV stations across the nation. He contacted each one to ask them to run his MPN PSA. Hundreds of stations agreed. Because the Federal Communications Commission requires TV stations to run PSAs at no charge, Richard was able to save a great deal of money and raise MPN awareness across the country. As a result of Richard’s efforts, TV stations can now easily download and run the MPN PSA at videopsa.com.
Richard, who is now retired, fills his time as an amateur portrait painter and bowls with his wife, DeAnna. When he isn’t tinkering with the PSA to get it ready for Blood Cancer Awareness Month, Richard and his wife spend time with their 16 grandchildren.

MARCY WORTHINGTON Patient Advocate


Marcy Worthington is a List Owner for MPN-NET, an online support group dedicated to MPN-related topics. Marcy’s position as List Owner means that she engages in a personal and supportive way with others in MPN-NET. She does everything from comfort newly diagnosed patients to answer a high volume of emails to offer encouragement and direct group members to the appropriate MPN resources. Marcy was diagnosed with polycythemia vera (PV) in 2002. While investigating what it meant to be part of the MPN community, Marcy got to know Joyce and Bob Niblack of the MPN Education Foundation. Since Marcy was already a talented photographer, she played a key role in documenting the MPN Education Foundation bi-annual Joyce Niblack Conferences. These gatherings attract world-renowned MPN specialists and advocates and, in her position as a photographer, Marcy helps share the events with those who cannot attend in person.
In her normal routine, Marcy cares for her husband and two dogs and teaches classes on forensic science. In addition to communicating with hundreds of people living with MPNs through MPN-NET, Marcy takes the time to share new studies and journal articles. She knows that many patients do not have MPN specialists nearby and must become experts on their own. Marcy will always take the time to send someone vital information that they can share with their doctor to help both the patient and Healthcare Professional make the most informed decisions.
2018 Judging Panel
An independent judging panel reviews the nominations and selects the recipients for recognition. The committee is made up of:

KRISSTINA GOWIN
DO


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.

JULIE R. LIBON
PATIENT ADVOCATE


Julie Libon is a 59-year-old MPN patient advocate who lives in Fort Lee, NJ. She was diagnosed in 2014 with myelofibrosis (MF). Upon diagnosis, Julie had never heard of MF. After much research, she learned that there was no cure and sparse medical research. Julie joined a few support groups and quickly realized that funding for MPN research was lacking.
Wanting to help others, Julie become proactive. With her sister, Lori, she formed an organization called HikeMF in 2014 to raise funds for MPN research.
HikeMF is a yearly event in Massachusetts that includes a hike, food, raffles, socializing, and fundraising for MPN research. Julie was thrilled when 125 hikers turned out and together raised more than $25,000 for MPN research that first year.
Through HikeMF, Julie has met other MPN patients. She often receives messages from newly diagnosed patients looking for information about their disease and wanting to meet others living with an MPN. Julie believes that knowledge is power and that knowledge also allays some of the fear that may come with an MPN diagnosis. She encourages people who contact her to research MPNs through legitimate sites so they can better understand their disease. Julie emphasizes the importance of patient support, and recommends that all patients connect with online or local support groups.
Julie is also very involved in the MPN community through social media. She helped organize the MPN Support Network, currently serves as an administrator for MPNforum, and is also involved with MPNforum Magazine. Julie was humbled and honored to have been recognized as one of the 2017 MPN Heroes.
Julie hopes to continue being active in the MPN community for many years to come. Her goal is to continue hiking, funding research projects, and helping other patients until a cure is found.

LINDSEY LYLE
PA


Lindsey Lyle is a physician assistant (PA) who has focused her career on the care of patients with hematologic malignancies. As a new PA working at University of Texas, MD Anderson Cancer Center, she developed enthusiasm for research and care of MPN patients. This passion continues as she collaborates to build an MPN program at the UCHealth University of Colorado Hospital in Denver.
Lindsey is a dedicated medical provider who believes strongly in patient education and the importance of having well-informed patients. She has served as a panelist at multiple Patient Power® Town Hall Meetings and continues to educate patients via Patient Power webinars. She has given many local and national presentations on myeloid malignancies including MPNs. Lindsey currently serves as the editor for MPN Updates through JADPRO (Journal of the Advanced Practitioner in Oncology), a year-long initiative to raise awareness and provide education about MPNs to Advanced Practitioners.
In her spare time, Lindsey loves taking advantage of the outdoor lifestyle that Colorado has to offer. You can often find her running trails or biking in the summer and skiing in the winter!

ANDI MALITZ
PATIENT ADVOCATE


Andi Malitz is an outspoken MPN patient advocate from the North Chicago suburbs. At 61 years old, she has been living with essential thrombocythemia (ET) since she was diagnosed at age 45. After her internist told her about her extremely high platelet count during a routine annual check-up, Andi was sent to a hematologist/oncologist, where a bone marrow biopsy confirmed the diagnosis.
Following initial treatment, Andi was relatively symptom free; however, her platelet count remained elevated. The plan to manage her platelet count came with severe side effects, which dramatically impacted Andi's quality of life. Andi felt frustrated by this experience and realized she needed to become her own advocate, seek out an expert, and learn about MPNs so that she could feel confident about the approach to managing her disease.
In 2015, Andi found out about the MPN Research Foundation and learned she could find support in other people who were experiencing similar frustrations. Andi attended a patient meeting at a well-known institution and listened to an MPN specialist deliver a presentation. Andi immediately made an appointment to see the specialist and formally became a patient. Andi believes that an MPN specialist's focus on quality of life and a complete understanding of the disease and the person with the disease make all the difference in treatment.
In March 2016, Andi's MPN specialist encouraged her to share her patient experience with the larger MPN community. Her willingness to share her journey opened the door for her to serve as an MPN patient advocate panelist at the 2016 Patient Power® MPN Town Hall. Andi has since participated in webcasts and in a variety of educational videos, and has served as a panelist with a variety of MPN specialists at various MPN events raising awareness of these diseases.
Andi remains a dedicated patient advocate for herself and others living with MPNs and continues to stay involved with Patient Power.
We Honor the 2017 MPN Heroes!
You nominated them for making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Click below to learn why the 2017 MPN Heroes were acknowledged for their commitment to MPN care and to hear their personal stories.

BARBARA ABERNATHY Patient Advocate


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.

MARK HEANEY MD, PhD


Dr. Mark Heaney has devoted more than 20 years to conducting research toward better MPN treatments and to serving patients who are living with them.
He’s led and participated in many impactful lab research studies and more than 20 clinical trials focused on MPNs and other rare blood cancers. He’s also known as a compassionate and generous physician to the more than 100 MPN patients he cares for.
In addition to his years of dedication to patient care and research, Dr. Heaney has actively pushed to raise awareness of MPNs through education and advocacy—especially through his work with Patient Power® and the Leukemia and Lymphoma Society—where he’s brought patients, physicians, and researchers together to learn from each other.

GABRIELA HOBBS MD


Dr. Gabriela Hobbs is a rising young star in the field of MPNs, known for both her "leave no stone unturned" dedication to caring for patients as well as her promising and impactful clinical research.
In 2014, Dr. Hobbs established a dedicated MPN center at Massachusetts General Hospital in Boston, bringing these conditions to the forefront of the hematologic malignancy program and raising awareness about the need for more research. She’s developed several clinical trials focused on MPNs, and she also collaborates with other major US cancer centers toward better understanding the mechanisms that lead to MPNs and their progression.
In the office, Dr. Hobbs is known for her compassionate and holistic approach to patient care, with treatment modalities that include lifestyle modification, stress reduction, and exercise to help improve her patients’ overall health in addition to their MPN conditions. Outside of the office, Dr. Hobbs is active in patient education, often organizing patient information meetings in the Boston area, performing community outreach, and educating community healthcare professionals about MPNs to bring greater awareness to these rare conditions.

CATRIONA JAMIESON MD, PhD


Dr. Catriona Jamieson and her team at University of California – San Diego Cancer Center have been making headlines in recent years for their groundbreaking research into cancer stem cells. Dr. Jamieson’s goal is to find more selective, less toxic therapies for MPNs and other blood cancers.
By using blood samples to study the DNA and RNA of patients with MPNs, Dr. Jamieson has focused on finding out how MPNs might start and what makes some cases progress. In the process, she and her team learned that errors in RNA appear to play a key role, driven by an editing enzyme called ADAR1. Dr. Jamieson’s team is now working on potential treatments that could "dial down" ADAR1 activity and hopefully turn off the mechanism that lets cancer cells make more copies of themselves. They’re also researching potential diagnostic tests that could detect ADAR1 activity, allowing physicians to target therapy against ADAR1 based on individual patient data. In the future, Dr. Jamieson foresees that ADAR1-focused diagnostics and treatments could allow for personalization of therapy, allowing for targeted treatments that could be optimally timed based on test results. Dr. Jamieson’s mission is to translate her lab research to the clinic as quickly as possible to make that a reality for MPN patients.
In the meantime, Dr. Jamieson works to help patients understand the latest MPN research findings, by speaking at events and creating informative videos for Patient Power® and the MPN Research Foundation.

SUSAN LECLAIR PhD


Dr. Susan Leclair is well-known throughout the MPN community, especially for her approachability and down-to-earth explanations for MPN patients around the world who are puzzled by the technicalities of their conditions and test results.
Dr. Leclair makes herself accessible "live" on a number of list serves including MPN Net, where patients and caregivers can ask questions and get personalized answers via email about the meaning and significance of their lab report data—a service praised by patients near and far. She has also been a spirited speaker at many conferences and symposia over the years, has served on countless panels, and has been featured in Patient Power® and MPN Education Foundation educational videos.
Now retired from University of Massachusetts Dartmouth, Dr. Leclair spent more than 40 years as a clinical lab professional, focused on hematology, oncology, genetics, and bioethics. As a lab sciences professor for both medical and non-science majors, she also honed her unique ability to clearly explain technical scientific concepts using simple language, analogies, and illustrations that everyone can understand.

JULIE R. LIBON Patient Advocate


When Julie was diagnosed with myelofibrosis (MF) in 2014, she felt her mission was clear: to organize an event that could raise funds toward researching a cure. In 2015, she and her sister organized the first HikeMF, a 3-mile walk through the woods in suburban Boston, which they hoped might attract a couple dozen people and a little money for the MPN Research Foundation. They chose a hike as a way to pay tribute to a favorite family pastime they’d adopted as children. Julie was thrilled when 125 hikers turned out and together raised more than $25,000 for the cause that first year.
Since then the annual hike has gained even more participants, raising nearly $45,000 for MPN research this past year and spreading to other regions. Julie has helped people in other states organize local fundraising events, and she’s attracted followers around the globe who also hike on the designated HikeMF day.
Julie’s contributions to the MPN community don’t stop there. She helped organize the MPN Support Network, an online referral source for MPN patients. And she’s active in MPN social media as well, serving as an administrator for the MPNforum’s Facebook page.

LINDSEY LYLE PA


From the time she was 8 years old, Physician Assistant Lindsey Lyle knew she wanted to work in medicine. Following a traumatic childhood bicycle accident, she’d spent a lot of time under the care of physician assistants, among others, who inspired her. During her medical school rotations, she gravitated towards caring for patients with MPNs and other blood cancers.
Lindsey started her career working closely with a physician devoted to MPNs at University of Texas, MD Anderson Cancer Center. Seeing an unfilled need, she became passionate about educating both patients and medical providers about MPNs. Since returning to her home state of Colorado, Lindsey’s commitment to the MPN community has grown even stronger. She’s collaborating to build an MPN program at UCHealth University of Colorado Hospital and is highly regarded among her patients and colleagues for her exceptional knowledge of MPNs, her individualized attention to each patient’s needs, and her enduring commitment to MPN education.
On that front, Lindsey has been a panelist in several videos and webinars for Patient Power® and UCHealth University of Colorado Hospital. She’s also served as chair and moderator of roundtable discussions hosted by JADPRO (Journal of the Advanced Practitioner in Oncology) and currently serves as its MPN Updates editor.

CAROLE MILLER MD


Dr. Carole Miller has a passion for cancer research and for community service, and she’s made profound contributions to both over her long career.
As director of the award-winning Cancer Institute at St. Agnes Hospital in Baltimore, Maryland, Dr. Miller has grown their community-based research program over the past 15 years to include more than 30 ongoing clinical trials, particularly around blood cancers. Many of these trials have led to important breakthroughs and provide hope to many MPN patients faced with advancing disease and dwindling options. Patients from the area and across the country seek her care and expertise. Dr. Miller is particularly proud of her early work at Johns Hopkins University on a revolutionary drug that is now widely used to treat chronic myelogenous leukemia (CML). That work also shed light on the molecular changes that lead to malignancy and laid the foundation for targeted therapies that are a primary focus of current MPN research.
Dr. Miller is a nationally known expert on blood cancers, as well as a renowned community health advocate. She founded the Baltimore Blood Club, which brings together community and academic physicians to discuss clinical trials, difficult patient cases, and new treatment options with the broader goal of elevating patient care. She’s also worked with the American Society of Hematology, the Association of Community Cancer Centers, the Leukemia and Lymphoma Society, and other organizations to educate community physicians and patients about MPNs and other blood cancers and to raise awareness about them.
2017 Judging Panel
An independent judging panel reviews the nominations and selects the recipients for recognition. The committee is made up of:

GABRIELA HOBBS
MD


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.

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.

LINDSEY LYLE
PA


Lindsey Lyle is a physician assistant who has focused her career on the care of patients with hematologic malignancies. As a new PA working at University of Texas, MD Anderson Cancer Center, she developed enthusiasm for research and care of MPN patients. This passion continues as she collaborates to build an MPN program at the UCHealth University of Colorado Hospital in Denver.
Lindsey is a dedicated medical provider who believes strongly in patient education and the importance of having well-informed patients. She has served as a panelist at multiple Patient Power® Town Hall Meetings and continues to educate patients via Patient Power webinars. She has given many local and national presentations on myeloid malignancies including MPNs. Lindsey currently serves as the editor for MPN Updates through JADPRO (Journal of the Advanced Practitioner in Oncology), a year-long initiative to raise awareness and provide education about MPNs to Advanced Practitioners.
In her spare time, Lindsey loves taking advantage of the outdoor lifestyle that Colorado has to offer. You can often find her running trails or biking in the summer and skiing in the winter!
Note: As a member of the judging panel, Lindsey agreed to remove herself from voting for any recognition where her own work, institution, or relatives were nominated.

ALISA ROUSE
Patient Advocate


Alisa is an MPN patient and advocate who lives in Phoenix, AZ. She is 37 years old and was diagnosed over 20 years ago. She was diagnosed with an MPN as a teenager in 1996, after years of seeking answers from multiple doctors. She was initially misdiagnosed with essential thrombocytosis at 16, but after a bone marrow biopsy, the diagnosis was changed to high-risk polycythemia vera. At that time, not much was known about MPNs, and the doctors did not know how to treat her being so young. Alisa did not know where to turn or if she was receiving the correct treatment. This frustrating experience is what made her realize she needed to become her own advocate and started to seek out an expert and learn about MPNs.
In 2012, she became involved in social media and began to advocate in several MPN Facebook groups helping many patients on a daily (or regular) basis. She recently started a Facebook group for patients who are undiagnosed to help educate and guide them through the diagnosis process so they know they are being correctly diagnosed. She has worked on an advisory board for social media to help others understand how to use social media to advocate for rare diseases. Alisa is heavily involved in her local community and on the Internet, helping others learn the importance of being educated and how to be your own advocate. Most recently, she has become involved with the CHAMPN program. She tries to share her unique experiences as much as possible because she never wants someone with a rare disease to feel alone like she did when she was diagnosed.
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 below to learn why the 2016 MPN Heroes were acknowledged for their commitment to MPN care and to hear their personal stories.

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®.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.
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 below to learn why the 2015 MPN Heroes were acknowledged for their commitment to MPN care and to hear their personal stories.

DAVID BOULE
Patient Advocate


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
RN, BSN, OCN


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.

DAVID DENNY
Patient Advocate


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.

JASON GOTLIB
MD


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
Patient Advocate


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
Patient Advocate


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.

CHRISTOPHER P. HOLROYDE
MD


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]."

MPN RESEARCH FOUNDATION
Patient Organization


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


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.

GUADALUPE R. PALOS
RN, LMSW, DrPH


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
PharmD, MBA


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.

RON ANDERSON,
Patient Advocate


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.

KATHY LATOUR


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


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 Alexander,
Patient Advocate


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 Blackstock,
Patient Advocate


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 Hjerpe,
Patient Advocate


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.

Timothy Leslie,
Caregiver


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 Lowden,
Caregiver


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 Niblack,
Patient Advocate


Joyce receives a posthumous honorary distinction in the category of Commitment to the Broader MPN Community. It was Joyce’s fierce commitment to her MPN family that set the standard for patients taking an active role in their own care.
As founder of MPN-NET support group, Joyce’s involvement in the MPN community was prolific. She co-authored scientific papers, raised funds, started foundations, organized conferences, and more. She did it all while striving to alleviate MPN patient suffering, a subject she knew a lot about. For her prodigious efforts, Joyce’s legacy will continue to be honored by the MPN community.

Zhenya Senyak,
Patient Advocate


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.

Richard T. Silver
MD, Weill Cornell Medical College-New York Presbyterian Hospital


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 Vogt,
Caregiver


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


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.

Emily Knight
RN, OCN


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 O’Bannion Martz


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.

Kathy LaTour


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.

Alyson Harper


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 Browning,
Caregiver


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 Goldberger,
Patient Advocate


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."

Ashley Gould,
Caregiver


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.

Ron Kruszewski,
Patient and Advocate


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.

John Mascarenhas,
MD


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.

Ruben Mesa,
MD


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.

Abdulraheem Yacoub,
MD


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


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


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


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


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


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.
Who Are the Sponsors of the MPN Heroes® Recognition Program?
MPN Heroes is a program sponsored by Incyte Corporation and in collaboration with CURE Media Group, publishers of CURE magazine.

