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.

2018 marks the sixth 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 2018 MPN Heroes Celebration Event, hosted by CURE Media Group, will take place in San Diego, CA in November, 2018.

Sponsors

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

Incyte logo
Cure logo

2018 Judging Panel

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

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 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 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 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.

MPN Heroes Recognition Program 2018 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 13, 2018
  • 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, MK&A, 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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