November 2015
 
           The MPN Community Connection 
             Educating and Advocating on behalf of those affected by myelofibrosis, polycythemia vera, and essential thrombocythemia  
Save the Date

  January 28, 2016
  Seattle, WA

Speakers
Dr. Ruben Mesa, MD
Dr. Laura Michaelis, MD
Dr. H. Joachim Deeg, MD
Gretchen Gruender, Nutritionist  
 
February 25, 2016
Baltimore, MD

March 17, 2016 
San Mateo, CA

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Coming in December's
MPN Community Connection

A full recap of the 2015 American Society of Hematology (ASH) Meeting in Orlando from our Scientific Advisor,
Dr. Ruben Mesa
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Healthy Food Choices
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Small changes can make a big difference to your health. Try incorporating at least six of the eight goals below into your diet. Commit to adding one new healthy eating goal each week over the next six weeks.

MPN Patient Impact Study
(myelofibrosis and polycythemia vera patients only)
 
The goal of this study is to understand the impact of MF/PV on work and productivity and the related financial impact to patients and their families.  

Click here for details 
In the Trenches:
Dr. Catriona Jamieson, MD, PhD 
Moores UCSD Cancer Center
Dr. Jamieson specializes in myeloproliferative neoplasms and leukemia. She studies the mutant stem cells and progenitor cells in myeloproliferative neoplasms. These cells can give rise to cancer stem cells. Cancer stem cells may lie low to evade chemotherapy and then activate again later, causing disease progression and resistance to treatment. Her goal is to find more selective, less toxic therapies. 

Catriona Jamieson, M.D., Ph.D., is Associate Professor of Medicine in the Division of Hematology-Oncology, Chief of the Division of Regenerative Medicine, Deputy Director of the Sanford Stem Cell Clinical Center, Co-Leader of the Hematologic Malignancies Program, and Director of Stem Cell Research at the Moores UCSD Cancer Center.

Dr. Raajit Rampal, MD, PhD
Memorial Sloan Kettering, NYC

Dr. Rampal serves as an Assistant Attending Physician on the Leukemia Service at Memorial Sloan Kettering Cancer Center. Clinically, Dr. Rampal focuses on the care of patients with MPNs. In addition, he is a translational researcher, and spends his time both in the laboratory and designing novel clinical trials, with the aim of bringing the newest science into the clinic.

The focus of his research has been to understand and explore the spectrum of genetic mutations in MPNs. Insights from 
these studies are being used to better understand the development of MPN, as well as to develop new strategies to treat these diseases. This work has led to several publications describing the genetic landscape of MPNs. Importantly, these efforts have also led to the development of novel clinical trials for patients with advanced myelofibrosis and leukemia arising from MPNs.


Clinical Trials
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 details.
Patient Commentary
Women & MPN:  One Size Does Not Fit All
Marina
Sampanes Peed
  Any parent of boys and girls will confirm that there are differences between the genders not based on social conditioning.  Yet much of the research for decades had mo stly male subjects; what was learned was applied to women. That's why I was so excited to learn about the newer MPN research that teases out the particulars of female and male patients.  Many of the virtual conversations in the various MPN on-line support groups speak in generalities.  As more data becomes available ne wly-diagnosed patients and caregivers may more quickly understand that this in not a "one size fits all" disease.
Vietnam:  The Battle at Home
Vietnam Veteran    Barry Halem
See the guy in the picture.  Nice  smile on the  ou tside, but inside, not so much.  That is what it's like living with essential thrombocythemia. It's a life sentence without parole. The need for MPN advocacy and continued MPN research is essential or there would be no smile at all.

Over the last year, in an effort to influence the Veterans Administration, MPN Advocacy and Education International and I have made contact with almost three hundred Vietnam Veterans with a myeloproliferative neoplasm (MPN) and we continue our outreach to find more. The VA has denied almost all claims for compensation because they say there is no scientific proof that these diseases resulted from exposure to Agent Orange.  Click here to read more.