We Honor the 2013 MPN Heroes
You nominated them for making a difference in the lives of people living with myeloproliferative neoplasms (MPNs). Their actions made them heroes. Hear their personal stories and learn why the 2013 MPN Heroes were acknowledged for their commitment to MPN care.
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 Judging Panel
An independent judging panel reviewed the nominations and selected the recipients for recognition. The panel consisted of:
George H. Steele
Patient Advocate
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 six 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 four 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 one year, two 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 medical degree 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
Patient Advocate
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 had over 25 years experience as a leader at global communications agencies in strategic planning, marketing, communications, and patient and professional medical education in conjunction with industry partners. Mary was President and CEO of a healthcare communications agency within the Lowe Healthcare/Interpublic Group.
Mary is also an advocate for the growth, development, and contributions of women to the healthcare industry, both as a former President and Board Member of the HBA, Healthcare Businesswomen’s Association. She holds an MS degree in Organization Development from American University in Washington, DC.
KATHY LATOUR
Co-Founder and Editor-at-Large of CURE Magazine
Diagnosed with invasive breast cancer in 1986, Kathy LaTour had a mastectomy and chemotherapy and has been active in the national survivor community ever since, speaking to survivor, medical, and lay audiences about the need for psychosocial support. Ms. LaTour experienced a second diagnosis of breast cancer resulting in a second mastectomy in fall 2007. Her book, The Breast Cancer Companion, was published by William Morrow and Co. in 1993.
In 2001, she cofounded CURE magazine with Dr. Vinay Jain. Today she is editor-at-large of the publication, which is the largest direct-to-patient cancer magazine in the country. For her writing on cancer she has received numerous awards, including a first place from the Association of Health Care Journalists in 2011 for her article The Cost of Living, which looked at the late effects of radiation for long-term survivors.
In 2004, she debuted her one-woman show "One Mutant Cell," a humorous and poignant account of her journey through breast cancer, which she has performed more than 50 times for a variety of cancer events around the country.
She served for four years on the board of the National Coalition for Cancer Survivorship, and helped found Gilda’s Club North Texas, now known as Cancer Support Community North Texas. She was also instrumental in founding The Bridge Breast Network in Dallas, a unique coalition of breast cancer survivors and area Healthcare Professionals who are providing diagnosis and treatment to uninsured women who may have breast cancer.
