Rare Disease Report

Gala for MPN Heroes on Eve of ASH 2014 Annual Meeting

DECEMBER 06, 2014
James Radke
Cure™ magazine hosted the 2nd Annual MPN Heroes Reception and Gala Recognition Dinner honoring nine individuals in the field of myeloproliferative neoplasms (MPNs), on the eve of the 56th  American Society of Hematology (ASH) Annual Meeting and Exposition.
 
The gala honored nine people who have made a difference within the MPN community. The celebration 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 National Organization for Rare Disorders.
 
Mike Hennessy, Jr., President of Cure Media Group, said:

“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.”

And the 2014 MPN Heroes are:

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 1400 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 MPN, was recognized for the inspiration she provided to find better treatment, provide better supportive care, and educate others about MPNs.
 
Timothy Leslie, from Colorado, was nominated for his dedication and unwavering endurance as caretaker for his wife through her illness.
 
Antje Hjerpe, a Carlsbad, CA-based advocate who has polycythemia vera, was nominated for her long-term dedication, stewardship, and volunteer service to the MPN Education Foundation.
 
Zhenya Senyak, a patient with myelofibrosis, a crusader, and publisher of MPN Forum, from Ashville, NC, was recognized for his passionate and accomplished work in helping 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 in helping 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 New York-Presbyterian/Weill Cornell Medical Center, was recognized for advancing the science of MPNs, his commitment to the MPN community for more than half a century, and his role in founding the Richard T. Silver, M.D. Myeloproliferative Neoplasm Center at Weill Cornell.
 
Silas Inman, director of Editorial and Multimedia for the Cure Media Group added:

"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."

Joyce Niblack Remembered

In addition to the above honorees, Joyce Niblack, a tireless and extraordinarily effective advocate, posthumously received an Honorary Distinction for her efforts in establishing and managing the first online patient community initiative, and for 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.

Actor Charles Esten of  “Nashville”

Charles Esten, from the TV show "Nashville," was a guest speaker at the event. Over a decade ago, Esten's daughter was diagnosed with acute lymphoblastic leukemia and is now in remission.  Following this experience, Esten has become an honorary spokesperson for cancer education, and he and his family have joined the battle to fund the research that will help families faced with blood cancers.

About MPNs

MPNs are a closely related group of hematological malignancies in which the bone marrow cells that produce the body's blood cells develop and function abnormally. The three main MPNs are polycythemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis (PMF).

Polycythemia Vera

Symptoms may include:
  • Headache; dizziness; vertigo; tinnitus; visual disturbances; angina pectoris; intermittent claudication
 Treatments:
  • Phlebotomy
  • Low-dose aspirin
  • Hydroxyurea
  • Pegylated interferon
  • Jakafi® (ruxolitinib)

Essential Thrombocythemia

Symptoms (often asymptomatic) may include:
  • Headache; vision disturbances or silent migraines; dizziness or lightheadedness; coldness or blueness of fingers or toes; burning, redness, and pain in the hands and feet
Treatments:
  • Low-dose aspirin
  • Hydroxyurea
  • Anagrelide
  • Interferon

Primary Myelofibrosis

Symptoms may include:
  • Early satiety; fever; night sweats; weight loss or malnutrition; bone pain; itching (pruritus); anemia; joint pain; portal hypertension; extramedullary hematopoiesis
Treatments:
  • Jakafi® (ruxolitinib)
  • Allogeneic stem cell transplantation


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