'Nashville' Star Charles Esten Shares Personal Experience in Battling Rare Blood Disease, Congratulates New MPN Heroes for Creating Support Community and Other Good Works

Published: Wednesday, Dec 10, 2014

Actor and singer Charles Esten, whose daughter was diagnosed with leukemia when she was two and a half, shares the challenging and painful experiences of battling the disease.

Plainsboro, NJ and Wilmington, DE– 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:

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