Patient Advocates Honored as MPN Heroes

Zhenya Senyak describes his lifestyle as “monastic.” He doesn’t watch TV or go on vacation, and he rarely buys clothes.

There are things that have seemed more important to Senyak since he was diagnosed with myelofibrosis and vowed to use his love of research and science to help other patients with myeloproliferative neoplasms (MPNs).

Senyak works up to 20 hours a day publishing the online magazine MPNforum, as well as a quarterly journal of rigorously fact-checked scientific articles. Among other projects, he has also created a list of more than 150 patient-recommended MPN clinicians, each identified by geographic location.

“It became obvious that it would be the responsibility of patients to move the body of knowledge along so we can use it,” he says. “This became my life,” managing a “patient-support process” for “a living, very strong community.”

For his dedication and the progress he has fostered for the MPN community, Senyak was honored as one of nine MPN Heroes Dec. 5 by CURE magazine, Incyte Corporation and several community partners at a gala dinner and wine reception in San Francisco. Non-profit partners included CancerCare, Cancer Support Community, Leukemia & Lymphoma Society, MPN Research Foundation, MPN Education Foundation and National Organization for Rare Disorders.

Patient Advocates Honored as MPN Heroes

Kathy LaTour (far left), mistress of ceremonies, joins the MPN Heroes and their nominators on stage at the MPN Heroes ceremony on Dec. 5. 

The awards recognized the work and achievements of clinicians, caregivers and patient advocates dedicated to improving the lives of those living with rare blood disorders—particularly MPNs such as polycythemia vera, essential thrombocythemia and primary myelofibrosis, in which the bone marrow makes too many white blood cells. CURE and its collaborators acknowledged the winners for going above and beyond the standard of care, demonstrating leadership within the MPN community and advancing the science of MPNs.

The second annual MPN Heroes event also welcomed those who had nominated the winners and their peers for recognition. The event took place the evening before the 2014 annual meeting of the American Society for Hematology kicked off in San Francisco.

“This event showcases everything our company and CURE magazine support,” says Mike Hennessy, Jr., president of Cure Media Group. “It’s an honor for us to be able to recognize the achievements and accomplishments of these outstanding individuals.”

Charles “Chip” Esten, an actor who plays the role of Deacon Claybourne in the ABC television show "Nashville," took the stage during the event to discuss his family's cancer experience and to sing two songs, accompanying himself on an acoustic guitar.

Patient Advocates Honored as MPN Heroes

Charles Esten gives the audience an impromptu acoustic concert. 

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