March 2017  
           The MPN Community Connection            
  Educating and Advocating on behalf of those affected by myelofibrosis,
polycythemia vera, and essential thrombocythemia
2017 Events
United States 
Additional Speakers Being Confirmed 

March 30 
1/2 Day Morning
Novi, Michigan
Dr. Anas Al-Janadi
Dr. Kristen Pettit

May 18
1/2 Day Afternoon 
 New York City
Pediatric MPN
Dr. Nicole Kucine
Dr. Raajit Rampal 
June 9 
1/2 Day Morning  
Cleveland, OH
Dr. Raajit Rampal
Dr. Aaron Gerds

Dr. Ruben Mesa
Dr. Betty Hamilton
September 29 
Los Angeles, Ca
Women & MPN
Dr. Laura Michaelis
Dr. Jamile Shammo  
October 26 
Atlanta, GA
Dr. Elliot Winton
Dr. Laura Michaelis
Dr. Ruben Mesa
Dr. Raajit Rampal
November 10 
Washington, DC
S peakers
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Srdan Verstovsek 
Friday, April 28  Melbourne, Victoria 

For the full list of speakers view flyer
Coming in next month's newsletter 
In The Trenches:

Meet the Australian
MPN Experts 

Pediatric MPN
Research Update

  A Patient's Clinical Trial Experience  
Upcoming Support Group Meetings 

Idaho-March 14
Pittsburgh-March 16
Indiana-April 3
New York City-April 20

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Mark your calendars for Friday, September 29, 2017 for the 3rd Annual Women & MPN Conference which will be held in Los Angeles, California.  

Speakers include:
 Dr. Laura Michaelis, MD 
Dr. Jamile Shammo, MD  

Additional speakers are 
being confirmed
Healthy Sex Life
Sexual Health After Transplant

 those uncomfortable questions
To learn more on male sexuality after transplant and female sexuality after transplant click here. 
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In the Trenches:
Dr. Ann Mullally, MD
Brigham and Women's Hospital 
Dr. Ann Mullally  
Dr. Ann Mullally is an Assistant Professor of Medicine at Harvard Medical School and a physician-scientist at Brigham and Women's Hospital (BWH)/Dana-Farber Cancer Institute (DFCI). Her laboratory studies the genetics, biology and therapy of myeloproliferative neoplasms (MPN) using MPN patient samples, mouse models and multiple different laboratory approaches. Dr. Mullally's MPN research interests include myelofibrosis, the biology of mutant calreticulin (CALR) in MPN, JAK2V617F MPN stem cells, improving the efficacy of JAK2 inhibitors and familial forms of MPN. The overarching goal of the research in her laboratory is to advance the understanding of the biology of MPN and to translate this into improved treatment options for patients dealing with these diseases.
 A Patient's Story:  Susan Hill
Susan Hill
My journey with myelofibrosis (MF) began in 2001 when I was diagnosed just as I was celebrating my 60th birthday. The diagnostic process took several months of lab tests, x-rays, biopsies, etc. When the hematologist told me that I had MF, he said only that there was no cure and he would treat the symptoms. Later he added that MF was a "ten year disease." There was no patient education information, no suggestion of a second opinion, no explanations of the aspects and course of the disease. My knowledge of MF was only what I could find online. MF was one of the MPDs, myeloproliferative disorders, not yet classified as a cancer.
Th e Ultimate Blood Brothers
Ron Anderson

Ro A nd erson, LA Support Group Coordinator,  received a bone marrow transplant eight years ago. His brother, a perfect match, was his donor. We asked his brother to share his experience as a donor.   
Was there ever a time, once you knew you were a perfect match for your brother, that you thought you would not be his donor?
No, by the time my brother's doctor told him he needed a bone marrow transplant he was seriously ill and probably would not survive for very long without a total transplant.  As it turned out, he and I have type A+ blood and, (thank God), I turned out to be a very good match for him.  I just felt very fortunate that I would be a great donor and could help him.

When I told him I was willing to be his donor I thought I would be going into a hospital operating room and have doctors use needles to remove my marrow from my pelvic bone.  Later, I found out about Peripheral Blood Stem Cells (PBSCs) and a process called apheresis ( a medical technology in which the blood of a person is passed through an apparatus that separates out one particular constituent and returns the remainder to the circulation..  My stem cells could be collected by drawing blood out of my veins, filtering them out and the rest of my blood would be given back to me.   I was very pleased to learn about this nonsurgical method.
Vietnam Veterans Update: 
MPNs on VA's Agenda Finally

Ann Brazeau, CEO, MPN Advocacy and Education International, and Dr. Raajit Rampal, MD, PhD, Memorial Sloan Kettering Cancer Center, attended an "open" meeting held by th e US Department of Veterans Affairs with the National Academy of Sciences' (NAS) Committee on Agent Orange and Health.  The meeting, held in Washington, DC on March 1st, addressed myeloproliferative neoplasms for the first time ever.  They are now being considered for further studies.  
Update: Joyce Niblack Conference

What' s New in the MPN Mutation World 

By Marina Sampanes Peed  

The identifiers among people living with Myeloproliferative Neoplasms (MPN) are getting more complicated, thanks to all the discoveries in the last few years. We tend to identify ourselves with the current diagnosis and gene mutation(s) identified through bone marrow biopsy or blood tests.
Clinical Trial 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. 
Pediatric MPN Event in NYC

Has your child been diagnosed  with an MPN - Myelofibrosis, Essential Thrombocythemia or Polycythemia Vera?
Are you a Young Adult with an MPN?

Join us in New Yo rk Ci ty on Thursday, May 18, 2017, for the first Pediatric MP N Education Program. This will be a half-day afternoon program with MPN experts, Dr. Nicole Kucine, MD, MS, Weill Cornell Medicine and Dr. Raajit Rampal, MD, PhD, Memorial Sloan Kettering Cancer Center. Additional speakers are being confirmed.