MPN Advocates Recognized

Kathleen Vogt is a dynamo — when it comes to advocating for her husband Gary, who was diagnosed with a myeloproliferative neoplasm (MPN).

MPN covers a range of blood cancers that originate in the bone marrow. Because they are such rare cancers, there are only a few specialists who devote their time to the disease. Indeed, one of the goals of the advocates is educating physicians about the needs of their patients, which may sound strange, but when you consider how much hematologists have to keep up with, the rare cancers get short shrift.

Vogt was one of the nine MPN advocates honored at the second CURE Magazine MPN Heroes recognition event held in conjunction with The American Society of Hematology (ASH) meeting, which brings hematologists from around the world to learn about the latest updates in blood disorders, including MPNs.

Vogt was one of four who won a Hero designation for service to the individual patient, meaning her care for Gary has garnered a lot of knowledge that is provided to the broader community of patients and caregivers through the Facebook page created by Hero Diane Blackstock and through one of the online newsletters run by Heroes Zhenya Senyak or David Alexander. Hero Antje Hjerpe was honored for her advocacy work and beginning the MPN Education Foundation. Susan Lowden was nominated by her husband Bob’s nurse for helping to inspire her to know more for her MPN patients. Tim Leslie, also nominated in the caregiver category, was unable to make the event because of his wife’s declining health due to MPN, a dedication for which he was honored.

These advocates are stepping into the void to provide community, support and information for the newly diagnosed. They provide information about clinical trials and treatment, but more importantly they provide information from the real experts, patients who have been there.

We call these individuals "Heroes,” because they have gone above and beyond their own circumstances to give time and talents to others experiencing the disease whether a patient or caregiver or health care professional. And for all their time, they asked nothing other than the satisfaction of knowing they have eased another patient or inspired one more nurse or educated one more doctor.

The ceremony also included a posthumous Hero recognition for Joyce Niblack, an MPN patient and advocate who began a national meeting of patients and physicians. Joyce died in 2009 but the meeting she began and that now bears her name is still going strong.

Incyte Corporation, the primary sponsor of the event, has a strong patient connection and plans to continue this event into the future. I hope other pharmaceutical companies follow suit.

Aside from a great dinner and the heroes being named, there were also a number of healthcare professionals on site who were in San Francisco to attend ASH, the annual meeting about blood disorders. A touching and appropriate moment was when many of them stood to applaud Hero Dr. Richard Silver, a hematologist who runs the center that bears his name in at New York Presbyterian-Weill Cornell Medical Center. Dr. Silver has made MPN his life work, spearheading many of the clinical trials that led to treatment discoveries.

Incyte Corporation, the primary sponsor of the event, was joined by community partners CancerCare, the Cancer Support Community, Leukemia & Lymphoma Society, the MPN Research Foundation, MPN Advocacy & Education International, the MPN Education Foundation, and NORD: the National Organization for Rare Disorders.

And the speaker for the evening provided a particularly poignant moment. Charles “Chip” Esten, who portrays Deacon Claybourne on the series Nashville, spoke of his family’s personal journey when his daughter Addie was diagnosed with acute lymphocytic leukemia 10 years ago. Esten is in his second year as the honorary spokesperson for the Leukemia & Lymphoma society. After his remarks he took up his guitar and played two songs for the audience.

For more information on MPNs please go to curetoday.com/events/mpn.