THE MPN HEROES® RECOGNITION PROGRAM

Celebrating the Fifth Anniversary of Honoring the MPN Heroes in Your Life!

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.

2017 marks the fifth 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 2017 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 2017 MPN Heroes Celebration Event, hosted by CURE Media Group, will take place in Atlanta, GA, on December 8, 2017.

Sponsors

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

2017 Judging Panel

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

I am currently an Assistant in Medicine at Massachusetts General Hospital and an instructor of Medicine at Harvard Medical School in Boston, MA. I was born and raised in Mexico City and moved to the United States for college. I completed my undergraduate degree in biotechnology and psychology at Tufts University and then attended medical school at Mount Sinai School of Medicine in New York. My residency training in internal medicine was at Brigham and Women’s Hospital in Boston, MA. Lastly, I completed my fellowship training in Hematology and Oncology at Memorial Sloan Kettering Cancer center, in New York, NY. At MSKCC, I was fortunate to have Ross Levine, MD as my mentor. Ross is a leader in the field of myeloproliferative neoplasms research and his guidance was crucial to setting me on the path to become a clinical investigator in the field of MPNs.

I joined the faculty at Massachusetts General Hospital in 2014 and with the outstanding mentorship of doctors Ruben Mesa and Timothy Graubert I have established an MPN clinic at MGH. My goal as a clinician and investigator is to create a comprehensive myeloproliferative neoplasm clinic and research program. The main focus of my research is to conduct clinical trials for patients with MPNs. In addition, I collaborate with basic science investigators such as Ann Mullally, MD, within partnership of the Dana Farber Harvard Cancer Center in research that will allow us to gain better understanding of the mechanisms that lead to the development of MPNs. My ultimate goal is to bring comprehensive care and innovative treatments to my MPN patients.

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 4 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.

Lindsey Lyle is a physician assistant 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 University of Colorado 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!

Alisa is an MPN patient and advocate who lives in Phoenix, AZ. She is 37 years old and was diagnosed over 20 years ago. She was diagnosed with an MPN as a teenager in 1996, after years of seeking answers from multiple doctors. She was initially misdiagnosed with essential thrombocytosis at 16, but after a bone marrow biopsy, the diagnosis was changed to high-risk polycythemia vera. At that time, not much was known about MPNs, and the doctors did not know how to treat her being so young. Alisa did not know where to turn or if she was receiving the correct treatment. This frustrating experience is what made her realize she needed to become her own advocate and start to seek out an expert and learn about MPNs.

In 2012, she became involved in social media and began to advocate in several MPN Facebook groups helping many patients on a daily (or regular) basis. She recently started a Facebook group for patients who are undiagnosed to help educate and guide them through the diagnosis process so they know they are being correctly diagnosed. She has worked on an advisory board for social media to help others understand how to use social media to advocate for rare diseases. Alisa is heavily involved in her local community and on the Internet, helping others learn the importance of being educated and how to be your own advocate. Most recently, she has become involved with the CHAMPN program. She tries to share her unique experiences as much as possible because she never wants someone with a rare disease to feel alone like she did when she was diagnosed.

MPN Heroes Recognition Program 2017 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 14, 2017
  • 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 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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