"Nashville's" Charles Esten talks about helping those 'starting on their own tough, tough, brutal journey' fighting rare blood disease.
Plainsboro, NJ and Wilmington, DE (PRWEB) December 10, 2014
Star of ABC-TV’s “Nashville” Charles Esten talks about the importance of creating a community of support for those suffering from rare blood disorders in a video featured on CURE™ magazine’s website, http://www.curetoday.com/events/mpn (look at the Special Guest Speaker tab). Actor and singer Esten, whose daughter was diagnosed with leukemia when she was two and a half, shared the challenging and painful experiences of battling the disease with the audience at the 2nd Annual MPN Heroes recognition reception honoring nine individuals in the field of myeloproliferative neoplasms (MPNs) on December 5th in San Francisco prior to the American Society of Hematology’s annual meeting.
In the video, now live on CURE, published by CURE Media Group of Plainsboro, NJ, Esten thanks the honorees, all of whom have made a difference by going above and beyond the standard of care, demonstrating leadership within the MPN community or advancing the science of MPNs. In stressing the importance of a community of supporters, to which many of the heroes have contributed, Esten talks about his experiences, including taking his daughter to weekly treatments that included spinal taps and blood work. His daughter, now 15 and in remission for the last 11 years, is doing well, he reports.
“When you’re in remission early on, you don’t go, ha, ta da, we’re done. You sort of just drop your head and walk away and try to get further and further from the date when you found out she had it. But then you suddenly start to see other people who are involved, and how they’re starting their own tough, tough brutal journey, and you want to share something of being on the other side,” he says in the video.
“For anybody who is in that dark time right now, hang on, keep fighting. That light is there, and it will come. You’re in the desert now, but that desert doesn’t always last. You’ll get to another place, and when you do, it’s very likely that you’ll be like one of the...heroes in this room right now that remembers the desert and works hard to lift somebody else into their light,” Esten says.
The Dec. 5th event honoring the MPN heroes was made possible with support from Incyte Corporation, CancerCare, Cancer Support Community, Leukemia & Lymphoma Society, MPN Advocacy & Education International, MPN Education Foundation, MPN Research Foundation, and MPN Education Foundation, and National Organization for Rare Disorders.
“The MPN Heroes event is a great opportunity for us to acknowledge the contributions and efforts of these dedicated clinicians, advocates, and caregivers. We are looking forward to doing more events like this across a number of therapeutic areas,” said Mike Hennessy, Jr., President of Cure Media Group, which has been a source of information and inspiration for patients and families on the cancer journey since 2002.
More than 50 nominations were received and a steering committee that included patients, advocates, and healthcare professionals 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 myelofibrosis support group on Facebook serving approximately 1,400 patients and caregivers on at least four continents.
- Kathleen Vogt, a caregiver from Troy, NY, was nominated for being “the rock” for her patient 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 through his 10-year journey with his 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 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, a Carlsbad, CA-based ET patient and advocate, was nominated for her long-term dedication, stewardship, and volunteer service to the MPN Education Foundation.
- Zhenya Senyak,a myelofibrosis patient, crusader and publisher of MPN Forum, from Ashville, NC, 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, DC, 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.
- Dr. Richard Silver, who is affiliated 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.
"The MPN Heroes event characterizes CURE's commitment to advancing patient care, through the recognition of outstanding caregivers and advocates in the myeloproliferative neoplasms space. This year's honorees come from across the United States and represent a strong commitment to the MPN community and individuals with these rare blood disorders," said Silas Inman, Director of Editorial and Multimedia for the Cure Media Group.
Separate from the traditional MPN Heroes recognitions, Joyce Niblack, a tireless and extraordinarily effective advocate, received an 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. Joyce’s legacy will be remembered throughout the MPN community for helping patients overcome confusion, uncertainty, and fear through community and connection.
In an effort to further increase awareness in the MPN community, 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.
“We are inspired and grateful to this year’s MPN Heroes who unselfishly and tenaciously serve the MPN community,” said Hervé Hoppenot, President and Chief Executive Officer, Incyte.
In addition to honoring these extraordinary individuals, the event featured a stirring talk by special guest speaker Charles Esten, from the TV show "Nashville," discussing his family's cancer journey. Over a decade ago, Esten's daughter was diagnosed with acute lymphoblastic leukemia and is now in remission. Following this experience, Esten has become a honorary spokesperson for cancer education and he and his family have joined the battle to fund the research that will help families who are faced with blood cancers.
Visit http://www.MPNHeroes.com to learn more about this year’s MPN Heroes and for a list of the steering committee members.
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 The Wall of Voices, Incyte will donate five dollars to the MPN Research Foundation. For more information, visit http://www.voicesofmpn.com.
About CURE Media Group
CURE Media Group’s flagship product, CURE magazine, is the indispensable guide to every stage of the cancer experience. With nearly 1 million readers, CURE is the largest consumer publication in the United States focused entirely on cancer, with broad distribution to cancer patients, cancer centers, and advocacy groups. Through the magazine, live meetings, a resource guide for the newly diagnosed, the Extraordinary Healer(sm) national nursing award, and other books and online tools, CURE Media Group combines science and humanity to make cancer understandable. CURE Media Group is part of the Michael J. Hennessy Associates, Inc. (MJH) family of businesses, which includes the acclaimed OncLive (http://www.onclive.com) platform of resources for the practicing oncologist. For more information, visit http://www.curetoday.com or http://www.mjhassoc.com.
Incyte Corporation is a Wilmington, Delaware-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary small molecule drugs, primarily for oncology. For additional information on Incyte, please visit the Company's website at http://www.incyte.com.
Cure Media Group
Phone: (609) 716-7777, ext. 233
Incyte Media Inquiries:
Sam Brown Inc.
Phone: (608) 850-4745