THE MPN HEROES® RECOGNITION PROGRAM

Honor the MPN Heroes in Your Life!

MPN Heroes logo

Since 2013, the MPN Heroes Recognition Program has recognized the people and organizations that have dedicated themselves to improving the lives of people with MPNs. The program focuses on the three "classical" MPNs—or what are known as Philadelphia chromosome–negative MPNs.

Created in the spirit of fostering community, the program recognizes patients, Healthcare Professionals, caregivers, advocates, and organizations that contribute to bringing understanding, compassion, and strength to the MPN community.

2019 marks the seventh anniversary of the MPN Heroes Recognition Program, sponsored by Incyte Corporation and CURE magazine. Our goal is to create as many opportunities as possible for people with MPNs to be heard and to be supported, so more solutions and treatment options will emerge.

In appreciation

Thank you to all who participated in the 2018 MPN Heroes Recognition Program by nominating someone who has made a difference in MPN care. Your hero may be any of the following:

  • Patient whose strength has inspired you
  • Caregiver who has consistently offered you support and reassurance
  • Healthcare Professional who has listened to you and treated you with compassion
  • Organization or institution dedicated to improving MPN care and support

MPN HEROES CELEBRATION

The 2019 MPN Heroes Celebration Event, hosted by CURE Media Group, will take place in Orlando, FL on December 6, 2019.

Sponsors

MPN Heroes is a program sponsored by Incyte Corporation and CURE magazine.

Incyte logo
Cure logo

2019 Judging Panel

An independent judging panel reviews the nominations and selects the recipients for recognition. The committee is made up of:

David Denny is 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 is an avid MPN patient advocate. He is an administrator on the Myelofibrosis Private Support Group and is active on the MPNforum and other support groups and interacts with the MPN community regularly through daily emails and messages of support. David has 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 enjoys spending time with his wife, Lola, his two adult children, and his four grandchildren.

David holds 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 has served as the pastor of Whipple Ave Baptist Church in Canton, Ohio since 2007. He has spent a total of 33 years in pastoral ministry. David also has 13 years of experience in service to people with disabilities.

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

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

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

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

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

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

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

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

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

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

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

Julia recently moved to Jersey City, New Jersey with her husband and two cats. She can see the Freedom Tower in NYC from her apartment window and appreciates being able to walk and take in the sights of her active neighborhood. Julia also enjoys visits from her blended family of five young adult children and 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.

MPN Heroes Recognition Program 2019 Rules

The MPN Heroes program recognizes dedication to individuals and the MPN community. Individuals or organizations can be nominated in one of two categories. Recipients will be selected by a judging panel's review of nominations for recognition. Members of the judging panel receive honoraria for their service. In Category A, up to four recognition plaques will be given to chosen recipients, and in Category B, up to four monetary donations to nonprofit organizations and societies will be given in recognition of the four recipients recognized in this category. Incyte will make monetary donations to select non-profit 501(c)(3), US-based organizations or societies that improve the lives of individuals with MPNs.

Criteria for nominations in either category are as follows:

  • Choose only one category for the nominee to be considered
  • Clearly state the MPN (MF, PV, or ET) patient need being addressed
  • A completed nomination form must be submitted by September 12, 2019
  • The achievements of the organization or individual must be recent (ie, should have taken place within the last 24 months)
  • Organizations may submit an entry for their own program, but it must be for one specific activity or program and only one entry per year, and we strongly encourage independent confirmation
  • Individuals can be recognized posthumously
  • Institutions, organizations, or individuals can be nominated by themselves or by others, but they must be aware of the nomination, and the nomination must be approved by, and compliant with, any institutional rules and guidelines

Criteria: Category A: Commitment to the individual. Recognizing individuals who provide or demonstrate care, guidance, education, or support above and beyond the standard of care for one or more patients with MPNs. Types of work honored include demonstration of individual dedication by a nurse, Healthcare Professional, or caregiver whose contributions to an individual with an MPN had an evident impact.

Criteria: Category B: Commitment to the broader MPN community. Recognizing leadership in developing services or programs addressing the needs of patients with MPNs, families, friends, caregivers, and medical professionals through advancing the science and medical understanding of MPNs, education, awareness, or approaches to care.

Types of work honored could include advocating for better care, outreach to underserved populations, activities at the grassroots level, promoting the patient’s voice, providing MPN community leadership, creating awareness programs, innovative education materials, programs, or events, disease management initiatives, research and science-based programs, media outreach, or campaigns.

Exclusions:

  • Employees or agents of Incyte, VOZ Advisors, or other Incyte vendors and members of their immediate family as well as current program year judging panel members are not eligible for recognition
  • Nominated individuals, institutions, or organizations and the programs or activities nominated must originate and be executed in one or more of the 50 states of the United States, the District of Columbia, or Puerto Rico
  • Nominated programs must be independent of purchase, use, and prescribing for any Incyte product
  • The following are ineligible for recognition:
    • Programs or activities that Incyte provided grants or other funding for directly
    • Political lobbying activities
    • Medical research or publications that have been funded or directed by Incyte
    • Any nominee whose organization or institution does not allow recognition in the manner set forth in this program
  • Nominated individuals or organizations must serve or be involved with the myelofibrosis (MF), polycythemia vera (PV), or essential thrombocythemia (ET) communities
  • Judging panel reserves the right to exclude nominations of individuals for any perceived conflict of interest
  • Individuals or organizations may not be recognized two years in a row or for a length of time agreed upon by the judging panel. Click here to view past Heroes >
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