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2018 Events
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Friday, April 27
Nashville, TN
Registration Open
Dr. Michael Savona
Dr. Brady Stein
Additional speakers to be announced
View Flyer
Thursday, May 31
Cleveland, OH
Cleveland Clinic
Registration Open
Dr. Aaron Gerds
Dr. Betty Hamilton
Dr. Kristen Pettit
Dr. Naveen Pemmaraju
Thursday, June 7
Pittsburgh, PA
Registration Open
Dr. Raajit Rampal
Dr. John Mascarenhas
Dr. James Rossetti
Dr. Salman Fazal
Friday/Saturday
September 28-29
Chicago, IL
28th-1/2 Day
Women & MPN Conference
Dr. Laura Michaelis
Dr. Jamile Shammo
Dr. Gabriela Hobbs
Dr. Brady Stein
Dr. Robyn Scherber
29th-1/2 Day
MPN Pediatric/Young Adults
Dr. Nicole Kucine
Dr. Raajit Rampal
Dr. Linda Resar
Thursday,
November 8
San Mateo, CA
Dr. Raajit Rampal
Dr. Jason Gotlib
Additional speakers to be announced
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In the Trenches:
Dr. Michael Savona
Vanderbilt University
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Upcoming Support Group Meetings
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March 12
Madison, NJ
March 13,
Meridian, Idaho
March 15
Pittsburgh, PA
March 18
San Fransisco, CA
March 18
Atlanta, GA
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MPN Advocacy & Education International's updated, comprehensive MPN booklets now available
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Maintaining A Healthy Mental Attitude
It can be really difficult to maintain a positive mindset when dealing with a chronic illness. It is easy for all the uncertainty, discomfort and struggle to become overwhelming. Use these tips to help maintain a healthy mental attitude:
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Turn negative statements into positive ones. At first, it is really hard to do this but eventually, the more you do it, the more it will come naturally to you.
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Appreciate small victories. By actively reminding yourself of these small victories, you're training your brain to view yourself in a more positive way.
3. Reduce or manipulate your stress. No one actually lives a stress-free life (no matter how many green smoothies you drink or how much yoga you do!). Instead of trying to eliminate stress, it is more productive to simply try and reduce your stress or manipulate it to be a positive thing.
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MPN Specialists and Patients Come Together for 1st Time in San Antonio
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MPN Advocacy and Education International hosted its very first patient and caregiver program in San Antonio, Texas on February 24. Dr. Ruben Mesa, our scientific advisor and frequent speaker, initiated and assisted with this program's agenda. Drs. Mesa, Michaelis, Verstovsek, Scherber, Mascarehnas, Gotlib, Palmer and Lyons presented to a packed audience. We will return to San Antonio in 2020.
MPN Advocacy & Education International dedicated this program to Robert "Bob" Rosen.
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In the Trenches: A Physician's Perspective on the use of Social Media
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Dr. Naveen Pemmaraju, MD
MD Anderson Cancer Center
Dr. Pemmaraju has been a pioneer in the early stages of developing social media and its interface with hematology/oncology. We are pleased to have him offer his insights on the use of social media for both patients and medical professionals.
Q. For physicians who are balancing a heavy workload, how do you view the role of social media?
I think at least a working knowledge of social media usage is essential in today's modern era of information. I know many hematologists and other physicians who get a good chunk of information for the day from social media such as Twitter, including myself. In five minutes, one can quickly glean important items for the day in the hematology/oncology-specific areas of interest. These posts can be "liked," saving it for later reference when more time permits, serving as a personal bookmarking tool. Dr. Mike Thompson, my own Twitter mentor, published two really nice primers on this exact topic, and they provide a nice guide to getting yourself involved:
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A Veteran's Story: The Frustrations of Filing a Claim with the VA
By Wayne E.
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MPN Patient and Vietnam Veteran Wayne E.
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I served in the USAF Security Service, 6924th Security Squadron, stationed in Da Nang, Vietnam for one year (1970-1971) and was exposed to the deadly Agent Orange/Dioxin. In 2007, after a simple pre-op blood test, I was diagnosed with essential thrombocythemia (ET). Upon further study I was told I had an incurable, but manageable, blood cancer, coupled with a gene mutation (JAK2). The word cancer scared me. I had never heard of ET and I was at a loss for what to do. I didn't know where to go next. After much reading about these potentially deadly diseases, I found out I was one of many Vietnam Veterans who had an MPN.
In 2011, I filed my first claim with the VA. Until this filing, I was unable to get any substantial information from my primary care physician (PHP) or my hematologist/oncologist, as to what may have caused or contributed to my ET. They knew virtually nothing about Agent Orange. I contacted the National Institutes of Health, The Centers for Disease Control, and as many online medical sites as possible, all ending with a bigger question mark. Nothing could be explained to satisfy my inquiry.
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MPN Community Initiatives
MPN Advocacy & Education International
First Pediatric/Young Adult Program to be held September 29 in Chicago (registration opens soon)
Migraines in MPN Patients-A survey will be created soon and the initiation of a study to determine source and gender experiences.
MPN Research Foundation
MPN Challenge-Two year grants focused on emerging science and unmet needs.
Progression Project-Gathering data on who is progressing from ET or PV to MF and how to stop or slow the progression.
Interferon (IFN)
Initiative-Answering the questions of how and why IFN work for MPN patients.
Learn more
MyMPN-
Patient driven data collection project focused on learning more
directly from patients NUTRIENT study: funding start up investigation
into whether an anti-inflammatory diet helps with management of MPN.
Additional Community Project
MPN Stem Cell Timing Taskforce (MSTT)-This project will research attitudes toward SCT held by patients and hematologists. MSTT hopes to raise awareness of the dangers of a delay for qualified MPN patients. Learn more
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Clinical Trials-News Updates
MPN Advocacy and Education International's website provides a comprehensive list of current clinical trials and research projects, as well as up-to-date news related to myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET). Click the information below for the latest.
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