September 2018      
The MPN Communi ty Connection

Spread the Word
September 13th is MPN Awareness Day

2018 Events
Registration Open 
 
Friday
September 28
Women & MPN Conference
Chicago, IL

Dr. Laura Michaelis
Dr. Jamile Shammo
Dr. Gabriela Hobbs
Dr. Brady Stein
Dr. Ellen Ritchie
Dr. Alison Moliterno

Saturday 
September 29
MPN Pediatric/ Young Adults Conference

Dr. Nicole Kucine
Dr. Raajit Rampal
Dr. Linda Resar

Thursday, 
November 8
San Mateo, CA

Dr. Raajit Rampal
Dr. Jason Gotlib
Dr. Ruben Mesa
Dr. Michael Savona
Dr. Laura Michaelis
Dr. James Rossetti
Additional speakers to be announce


2019 Events

Florida
New York
Australia
MPN Awareness Day
September 13, 2018
 
As part of Blood Cancer Awareness month in September, the second Thursday of the month is  designated as MPN Awareness Day.

To help promote a better understanding of MPNs we urge all our friends in the MPN community to find a way to participate:


Be an MPN Advocate

Increase your outreach

Continue to educate yourself on MPNs
view videos from the experts

Upcoming Support Group Meetings 
Los Angeles, CA
September 15

Tokyo, Japan
September 16

New York, New York
September 20

Pittsburgh, PA
September 20


Coming in October's Issue

Recap of 
Chicago Patient Programs:

Women & MPN
Pediatric & Young Adult MPN

Vietnam Vets Update

In the Trenches:

Highlighting MPN Specialists

Patient Story


Health Tips from a Blood Cancer Survivor 



Blood Cancer and Transplant Survivor, Dena Mendes, offers the tips to help navigate a blood cancer diagnosis:

Think Positive -declare victories in your life

Be Grateful-even thru the most challenging days

Be Strong-fight for yourself and your loved ones

Be Your Own Advocate

Eat Healthy-nourish your body from the inside out


Seek support-maintain a personal support group to help thru the more difficult days
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Fourth Annual Women & MPN Conference to be held in Chicago

Four years ago, MPN Advocacy & Education International hosted its first conference focused on the specific challenges women face with an MPN. Since then, we've been to New York, San Diego and Los Angeles. This year, we're heading to Chicago, home of our partners, the MPN Research Foundation. 

On Friday, September 28th, a full day program will include presentations on cardiac complications, vascular presentation and outcomes, new clinical trials and drugs in the pipeline, case studies and ways to deal with MPN symptom burden. Plenty of time will be available for questions. All patients and caregivers are welcome to this program. Immediately following, join us for a "Mix and Mingle" on the rooftop of the Park Hyatt Hotel. Relax and chat with the specialists and others with wine and appetizers. If you are experiencing a financial hardship, please indicate this when you register and the fee will be waived. All are welcome!


Speakers for the Women & MPN Conference, MPN Specialists, clockwise from top,  Drs. Jamile Shammo, Brady Stein, Laura Michaelis, Alison Moliterno, Gaby Hobbs and Ellen Ritchie

First MPN Pediatric & Young Adult Symposium hosted in Chicago


There was a time when we didn't think young children could have an MPN. We now know MPNs do not discriminate. Infants, children and young adults are being diagnosed regularly. Pediatric MPN specialist Dr. Nicole Kucine, MD, MS, Weill Cornell Medicine, partnered with us to bring attention to this group of patients and to their very specific challenges. (view Weill Cornell's Pediatric MPN website)


Program speakers, from left, Dr. Nicole Kucine, Weill Cornell, Dr. Raajit Rampal, Memorial Sloan Kettering, and Dr. Linda Resar, Johns Hopkins Medicine
MPN Patient Advisory Council Formed
MPN Advocacy & Education International recognized the need for an advisory council made up of a diverse group of MPN patients. Our seven member council will play an integral role in the future of our advocacy efforts and educational programming. Their valuable insight, suggestions and firsthand experiences will help us help others throughout the MPN community. 

Our educational programs provide excellent opportunities to bring relevant topics and resources to patients and caregivers.  The work we do requires many moving parts. It is critical that we stay pertinent  and informed. The council will address current and potential challenges now to influence positive change in the future. To that end, MPN Advocacy & Education International recently joined with a group of patient advocacy organizations to urge the Department of Health and Humans Services (HHS) to pursue initiatives that will lower drug prices and reduce out-of-pocket costs of drugs. (view le tter of support)
In the Trenches: 
A Patient's Story: How I Diagnosed Myself

My journey with essential thrombocytosis (ET) began in May 2016.  Although, I am sure I had been dealing with it for at least four years before prior to that. I diagnosed myself after noticing that my gums were bleeding when I brushed and flossed. am a dentist, so how could this be? I have immaculate oral hygiene, floss and brush at least two times a day and get my teeth cleaned every 3 months. A little voice from one of my lectures in dental school went off in my head; I recalled my professor's words, "in the absence of gum disease or dental issues, bleeding gums can indicate a blood cancer and you should refer your patient to their doctor immediately." I didn't think that I would be the one to need the referral. 
MPN Advocacy in Australia: Getting Pegasys onto the Government's Approved Drug Listing

By Nathalie Cook
Above, MPN AA founding members Nathalie Cook and Ken Young attend the announcement for Pegasys
For more than 20 years, MPN consumer advocacy has been strong in Australia. This began with the tireless support that the late Ian Sweet offered fellow MPN sufferers via the US based MPN-NET email list from the late 1990s and continued when Ken Young established MPD-OZ in 1998, the first Australian email list, which he still manages today. Together these men have responded to thousands of emails from people with MPN both in Australia and around the world with messages of knowledge, wisdom and reassurance. In recent years other Australian online MPN groups have been setup to provide peer support to the MPN community.
MPN Advocacy & Education International Attends  3rd Annual MPN Horizons International Conference in Prague

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).