We Honor the 2014 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 2014 MPN Heroes were acknowledged for their commitment to MPN care.
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
The MPN Heroes community honors the late Zhenya Senyak for his immeasurable impact on the myeloproliferative neoplasm (MPN) community and as a crusader for "this battle, these friends.” A science writer with "well-disciplined skills," Zhenya was nominated as an MPN Hero for his Commitment to the Broader MPN Community.
Zhenya published the online magazine MPNforum as well as a quarterly journal of rigorously fact-checked scientific articles. Zhenya 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. His legacy will be carried on by those who were inspired by his devotion to others affected by MPNs.
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 Judging Panel
An independent judging panel reviewed the nominations and selected the recipients for recognition. The panel consisted 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
Patient Advocate
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
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 health care professionals who are providing diagnosis and treatment to uninsured women who may have breast cancer.
ALYSON HARPER
Patient Advocate
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.