We Honor the 2015 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 2015 MPN Heroes were acknowledged for their commitment to MPN care.
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 Judging Panel
An independent judging panel reviewed the nominations and selected the recipients for recognition. The panel consisted of:
DAVID WALLACE
Patient Advocate
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
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.
LAURA C. MICHAELIS
MD
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.
