February 2016
 
           The MPN Community Connection 
             Educating and Advocating on behalf of those affected by myelofibrosis, polycythemia vera, and essential thrombocythemia  
Save the Date

February 25, 2016
DC/Bethesda, MD

The Hilton Garden Inn

Dr. Raajit Rampal MD, PhD, Memorial Sloane Kettering

Dr. Nicole Kucine, MD, MS, New York Presbyterian Hospital/Weill Cornell Medicine

Amy Niles
  Patient Access Network (PAN) Foundation

Additional speakers to be announced

Click here to view flyer 


March 17, 2016 
San Mateo, CA 
 
Dr. Ruben Mesa, MD 
Dr. Laura Michaelis, MD    
Dr. David S. Leibowitz,MD
Dr. Jason Gotlib, MD

April, 2016 
The Carolinas

May, 2016 
The Dakotas

June 23, 2016 
 Boston, MA 

September, 2016 
 Women & MPN
New York City 
 
Visit our Events Webpage 
NEWS UPDATE

On January 27, The Centers for Medicare and Medicaid Services (CMS) is finalizing a proposal to  expand national coverage for allogeneic hematopoietic stem cell transplantation (HSCT) for three separate medical conditions including myelofibrosis


Additional Information and Analysis of the decision coming soon!
Coming Next Month in 
MPN Community Connection

In the Trenches:

Dr. Marie Nguyen, MD
University of Michigan
Asst. Professor of Internal Medicine 

Vietnam Veteran & PV patient Richard Hummel


 ASH 2015 Highlights
Dr. Ruben Mesa, MD
MPN Fatigue Busters 

Eat small amounts of food throughout the day-5/6 snacks or small meals

*  
Keep plenty of nutrient dense foods in your diet-nuts and seeds,broth,
coconut water or other natural electrolytes

Eat lean proteins - fish, poultry, grass fed meats

*  
Stay hydrated - at least eight-8 oz cups daily 
It doesn't have to be water but limit caffeine and sweetened beverages including soda

Stay active daily - find places to walk, work with a physical therapist or havesomeone who can be active with you

Courtesy of  

Gretchen Gruender  

Oncology Nutritionist

Seattle Cancer Care Alliance 

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Katharine Berman:  An MPN Scientist in the Making
Intel Science Talent Search Finalist
Congratulations to high school student Katharine Berman, who has been named a finalist in the Intel Science Talent Search for her project on the Effects of Calreticulin Mutations on Pathogenesis of Myeloproliferative Neoplasms. 

From a field of 300, Katharine has been chosen as one of the top 40 students nationwide who will travel to Washington, D.C. from March 10-16 to compete for more than $1 million in awards provided by the Intel Foundation.

Katharine explained to us her motivation for choosing this subject.  "W hen I was entering first grade, my grandfather on my father's side passed away due to an MPN which transformed to Acute Myeloid Leukemia.  At the time, I couldn't understand much about the disease, other than there was something wrong with my grandfather's blood.  I think this rooted my interest in cancer as a whole and motivated me to research this summer in the Ross Levine Lab under the mentorship of Dr. Elodie Pronier."  Katharine is a senior at Hastings High School,in Hastings-on-Hudson, New York.  She will be attending Yale University next Fall.
In the Trenches:
Dr. Srdan Verstovsek, MD, PhD
MD Anderson Cancer Center, Houston, TX

Dr. Verstovsek, "Serge" to his colleagues and friends, and "Dr. V" to some of his patients, is a professor in the Department of Leukemia, Division of Cancer Medicine at the University of Texas MD Anderson Cancer Center in Houston.  Dr. Verstovsek began his medical education at the University at Zagreb, Croatia in the early '90's.  He spent his summers working at the Roswell Park Cancer Institute in Buffalo, New York where he continued his research and was awarded his doctorate.  He completed his Internal Medicine Residency at the State University of New York followed by an oncology-hematology Fellowship at MD Anderson where he has practiced since 2001.

             New therapies for MPNs are continuously being tested in clinical trials at MD Anderson including:

PRM-151 (an antifibrotic agent)- Click to view trial
Nivolumab (an immunotherapy)- Click to view trial
ACE-011 (for treating anemia)- Click to view trial

Ron Anderson
Volunteering Forward, Making a Difference Helping MPN Patients
"Don't let this disease hold you back from what you were made for in this world."
Ron Anderson's MPN story is so similar to so many patients.  At the age of 38, he was experiencing a chronic cough that would not go  away. His physician ordered the usual physical exams and ordered routine blood work. When the blood tests came back, it showed everything normal with the exception of his hematocrit. The lab report showed that he had a HCT count of 72%. He was referred to a Hematologist/Oncologist, and underwent all of the confirming tests and was officially diagnosed with Polycythemia Rubra Vera.(PV).

Researching the disease, understanding PV life expectancy and the prognosis was not all that encouraging. Frankly, it scared him. But he went on with an active life with a full time career, and remained engaged in athletics, water skiing and snow skiing as a Ski Patroller. His treatment plan consisted of therapeutic phlebotomies only. But approximately six months after his original diagnosis, he experienced a myocardial infarction due to Polycythemia Vera. After recovering from the heart attack, Ron began his active involvement in the MPN community.  
   
MPN Clinical Trial Updates
 Recent Michigan Support Group Meeting with guest speaker Dr. Marie Nguyen 
 
Dr. Nguyen, (pictured above center),is Assistant Professor in Internal Medicine, Hematology/Oncology at the University of Michigan Comprehensive Cancer Center.  
Seattle Educational Program- January 28, 2016
Dr. Laura Michaelis, MD,
Medical School of Wisconsin, discusses the symptoms and burdens of myelofibrosis





Dr. H. Joachim Deeg, MD, Fred Hutchinson Cancer Research Center, discusses his work with myelofibrosis and the role of transplantation. 




Dr. R
uben Mesa, MD, Mayo Clinic, Arizona,
gave an overview of ASH 2015.  To view his video update click here