December 2017       
The MPN Community Connection
Educating and Advocating on behalf of those affected by myelofibrosis,
polycythemia vera, and essential thrombocythemia  
2018 Events

February 24, 2018  
San Antonio, Texas
Registration Now Open 
Dr. Ruben Mesa
Dr. Jason Gotlib
Dr. Srdan Verstovsek
Dr. Laura Michaelis
Dr. John Mascarenhas
Dr. Jeanne Palmer
Dr. Robyn Scherber

Go To Registration
San Mateo, CA
Nashville, TN

May 31
Cleveland, OH
Pittsburgh, PA
Women & MPN Conference 
Chicago, IL
Living in Paradox

by Guest Blogger 
Therese Fergo

A Patient's Perspective on MPN Patient Programs

Visit our blog
Coming in January's 

In the Trenches:

Dr. Jeanne Palmer
Mayo Clinic, AZ

 Dates and Details on 2018 MPN Patient/Caregiver Events
Upcoming Support Group Meetings 

January 18
Pittsburgh, PA   

Healthy Mind for the Holidays 
Focusing on what we can control is the key to success. In every moment, we can change our perspective on how we experience life. The holidays are no different.
 Take care of yourself first: 
Lack of self-care leaves us vulnerable to getting sick and prone to getting more irritated by little things  
Plan ahead, and do things in chunks:  
Break tasks down to more easily cross items off the to-do list
Delegate tasks, and get others to help: 
When we are pulled in so many directions, it becomes overwhelming. Minimize this by delegating 
Focus on experiences rather than things: Building memories is about the people we are with and the joy of the season 
Remember to laugh:
Being light-hearted can boost our moods, ease tension, and even improve memory, according to a recent study  
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2017 ASH Updates
The American Society of Hematology meeting was held from December 9th-12th, 2017, in Atlanta, GA. This annual meeting is one of th e key milestones on the calendar for research for MPNs. Here are a few of the highlights from the meeting: 

Many patients wondered what happeneded to Fedratinib, the drug Sanofi had in trials several years ago.  Amid some controversy, the drug was shelved, although many patients experienced positive responses. Fedratinib is back. It is a selective JAK2 Inhibitor, whereas existing treatments target both JAK1 & 2. Spleen reduction will likely continue to be a primary endpoint. For those patients resistant to current treatments, Fedratinib could be a potential option in the near future.  Read More

Vitamin Deficiency and Foggy Brain
Marina Peed summarizes the presentation by MPN Specialist, Dr. Catriona Jamieson, MD, PhD, on thiamine  pyrophosphate (B-1) deficiency and its impact on the brain.  According to Dr. Jamieson, it is well-documented that deficiency of thiamine pyrophosphate deficiency (vitamin B-1) causes what we refer to as "chemo brain" or "foggy brain." Extreme cases of thiamine deficiency can cause Wernicke's encephalopathy (biochemical lesions on the brain), that affect vision, confusion, and memory.  Read More  
5th Annual MPN Heroes Awards Celebrated at ASH 

Cure Magazine hosted the 5th Annual MPN Heroes Awards in Atlanta. See this year's honorees by  clicking here . Congratulations to each recipient.
Ann Brazeau, CEO of MPN Advocacy & Education International steps in as Mistress of Ceremonies.

In the Trenches: 
Dr. John Mascarenhas, MD
Icahn School of Medicine  
Dr. John Mascarenhas is Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and a member of the Tisch Cancer Institute in New York City. Dr. Mascarenhas is the Director of the Adult Leukemia Program and leader of Clinical Research within the Myeloproliferative Disorders Program at Mount Sinai. As a clinical investigator in malignant hematology with a focus in translational research involving MPNs, he is primarily responsible for the clinical trials portion of the Myeloproliferative Disorders Program at ISMMS. Dr. Mascarenhas is also the Principal Investigator (PI) of the clinical trials project within the National Cancer Institute sponsored Myeloproliferative Disorder Research Consortium (MPD-RC). He has served as PI or Study Chair of multiple investigator-initiated and industry-sponsored early and late phase clinical trials evaluating innovative approaches to the treatment of MPNs. 
Dr. Mascarenhas will be presenting at our MPN Patient/Caregiver Program on February 24th in    San Antonio,Texas.  View Flyer
The MPN Yoga Study: A Patient's Story
ET Patient Amy Manning
By Amy Manning
I stumbled across a call for MPN participants in a pilot study at Arizona State University, while researching online for information on Essential Thrombocythemia (ET). The researchers wanted to investigate whether patients with ET and other myeloproliferative neoplasms could find some relief from symptoms such as pain, fatigue and insomnia by using a mobile app for guided meditation.

While I hadn't experienced much pain, I'd been having bouts of fatigue and I had struggled for years with insomnia, which seemed to be worsening.