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.

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.

Charles Esten gives the audience an impromptu acoustic concert.

Over a decade ago, when she was 2 1/2 years old, Esten's daughter, the youngest of his three children, was diagnosed with acute lymphoblastic leukemia; she is now in remission. As a result of that experience, Esten has become an honorary spokesperson for cancer education through the Leukemia & Lymphoma Society, and he and his family have joined the effort to fund research that will help families who are faced with blood cancers.

“When you do what tonight’s honorees do—turn your life over to battle on behalf of your loved ones and so many others—it’s so powerful, so impressive and so moving to me,” Esten told the audience. “For anybody in that dark time, hang on, keep fighting. That light is there. You’re in the desert now, but the desert doesn’t always last. You will get to another place. You may be like one of the heroes here, who remembers that desert and works hard to lift somebody else up in their life.”

Kathy LaTour, mistress of ceremonies, awards Diane Blackstock her award for being an MPN Hero in the Commitment to the Individual category.

More than 50 MPN Heroes nominations were received, and a steering committee selected recipients in two categories, the first of which was commitment to the individual. The four recipients in this category included a patient/advocate and three caregivers:

•Diane Blackstock, from Hagerstown, Md., and an MPN patient for 37 years, was recognized for running an informative and compassionate private myelofibrosis support group on Facebook serving approximately 1,400 patients and caregivers on at least four continents.

•Kathleen Vogt, a caregiver from Troy, N.Y., was nominated for being “the rock” for her husband Gary while working full-time and simultaneously raising money to “out-Vogt (vote) myelofibrosis” by establishing the Light the Night Walk in Albany.

•Susan Lowden, from Blue Springs, Mo., a former hospice worker and enthusiastic caregiver for her husband Bob through his 10-year experience with MPN, was recognized for the inspiration she provided to find better treatment, provide better supportive care and to educate others about MPNs.

•Timothy Leslie, from Colorado, was nominated for his dedication and unwavering endurance as caretaker for his wife Patti through her illness.

The second category of recipients included individuals whose continuous efforts have had a significant impact on the broader MPN community:

•Antje Hjerpe, from Carlsbad, Calif., was diagnosed with polycythemia vera and has since become a patient advocate with the MPN Education Foundation. She was nominated for her long-term dedication, stewardship and volunteer service to the organization.

•Senyak, of Nashville, Tenn., was recognized for his passionate and accomplished work to help patients truly understand their disease, give them a sense of community and encourage them to mobilize for change.

•David Alexander, from Washington, D.C., is an advocate who was nominated for his efforts to help patients keep up with the latest research and publications on MPNs and for his role in the online support group MPN-NET.

•Richard Silver, an oncologist with Weill-Cornell Medical Center, New York Presbyterian, was recognized for advancing the science of MPNs, his commitment to the MPN community for more than half a century, and for his role in founding the Richard T. Silver, M.D. Myeloproliferative Neoplasm Center at Weill Cornell.

Separate from the traditional MPN Heroes recognitions, Joyce Niblack, a tireless and extraordinarily effective advocate, received a posthumous Honorary Distinction for her efforts in establishing and managing the first online patient community initiative and dedicating the last years of her life to the MPN community. Niblack’s legacy will be remembered throughout the MPN community for helping patients overcome confusion, uncertainty and fear through community and connection.

In short videos shown during the ceremony, winners spoke about their efforts, and nominators also shared some words.

“She pretty much saves my life every day,” Gary Vogt said of his wife, Kathleen. “She’s gone far beyond just being a wife. I love her more than my life.”

Hervé Hoppenot, president and chief executive officer of Incyte, echoed nominators’ thoughts about the people and organizations they recommended for recognition at the event. “The men and women recognized at this event continue to inspire us with their dedication and devotion to the MPN community,” he said.

Incyte, a biopharmaceutical company based in Wilmington, Del., focuses on the discovery, development and commercialization of proprietary small-molecule drugs, primarily for oncology. During the American Society of Hematology meeting, the company will be presenting new data about the use of its drug, Jakafi (ruxolitinib), in the treatment of MPNs.

Approved by the FDA in 2011 for the treatment of myelofibrosis, Jakafi was also approved several months ahead of expectations on Dec. 4 by the agency for a new indication—the treatment of polycythemia vera patients who have an inadequate response to or cannot tolerate the medication hydroxyurea.

To further increase awareness of MPNs, Incyte honored the four Heroes recognized for their impact on the broader MPN community by making a $25,000 charitable donation to an organization engaged in MPN activities on behalf of each Hero.

Supporting the recognition of MPN Heroes and the MPN community is an ongoing effort of Incyte’s Voices of MPN awareness program. For every post made on its Wall of Voices (voicesofmpn.com), Incyte will donate $5 to the MPN Research Foundation.

The members of the steering committee that selected the winners were:

• Abdulraheem Yacoub, an oncologist and assistant professor of medicine in the Division of Hematology and Oncology at the University of Kansas Medical Center.

• Emily Knight, a nurse with the Mayo Clinic’s Hematology Myelodysplastic Syndromes/Myeloproliferative neoplasms clinic. • Cheryl O'Bannion Martz, director of the longest-running cancer support group program in Michigan and a survivor of abdominal cancer.

• Kathy LaTour, a two-time survivor of invasive breast cancer, is a cofounder of CURE magazine and author of the book The Breast Cancer Companion, published in 1993. LaTour served as mistress of ceremonies for the MPN Heroes awards event.

• Alyson Harper, a person living with myelofibrosis.