May 2017  
 
            The MPN Community Connection 
  Educating and Advocating on behalf of those affected by myelofibrosis,
polycythemia vera, and essential thrombocythemia  
2017 Events
 
REGISTRATION IS OPEN FOR ALL EVENTS

 
Friday
June 9 
Cleveland Clinic Cleveland, OH 
Intercontinental Hotel 
  
Speakers
Dr. Aaron Gerds

Dr. Ruben Mesa
 
Dr. Betty Hamilton
Amy Niles, PAN 
Additional Speakers 
being Confirmed
Flyer 
 
Friday
September 29 
Los Angeles, Ca 
3rd Annual
Women & MPN Program 
 
Speakers
Dr. Laura Michaelis
Dr. Jamile Shammo 
  Additional Speakers 
being Confirmed
Flyer 
 
Thursday 
October 26 
Atlanta, GA 
 
Speakers
Dr. Elliot Winton
Dr. Laura Michaelis
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Anas Al-Janadi 
  Additional Speakers 
being Confirmed
Flyer 
 
Friday
November 10 
Washington, DC 
 
S peakers
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Srdan Verstovsek
Dr. Anas Al-Janadi
 
Flyer  
  
 
Upcoming Support Group Meetings 

New Mexico-May 6
Idaho
-May 9
Pennsylvania-May 18

Coming in next month's newsletter 
 
In The Trenches:

Patient Story: Ron K

 Resource Packet 
for MPN Vets
 Caregiver Resources
Web site Updates

MPN Advocacy & Education International  will be adding a caregiver page to our website  to provide support and resources for those individuals caring for an MPN patient.



Five Foods to
Fight Fatigue
 
 
Oatmeal: Eat it first thing in the morning for instant energy.

Yogurt: Protein stays in the stomach longer than carbohydrates, which translates into a steady source of energy.

Spinach: Not only is it one of the most iron-dense food sources on earth, it's an excellent source of energy-supporting B-vitamins.

Nuts and Seeds: These are nutrient-dense foods packed with high-quality protein and healthy omega-3 fats.

Beans:
All types are low in fat, high in fiber, and provide a good balance of carbohydrates and protein.

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MPN Advocacy & Education International Goes to Australia

On April 29, 2017, MPN Advocacy & Education International and their partners, MPN Alliance Australia, brought the very first patient/caregiver education program to Australia. This concerted effort took months to prepare and a collaboration that has strengthened our commitment to the MPN communities around the world.  Over 150 patients and caregivers joined us for a daylong program. Australian and American MPN specialists presented timely and reliable information to this growing population. The extraordinary benefits to patients and caregivers at these events is invaluable. These programs empower patients with the knowledge they need to better understand the complexities of MPNs.  



The video webscast of this event will be 
available the week of May 8th.  

Meet the Australian MPN Specialists

In  addition  to Drs. Mesa, Michaelis and Rampal, from the U.S., we were honored to have six MPN specialists from Australia at the Patient/Caregiver Education Program.  
 

MPN Advocacy & Education International and MPN Alliance Australia Engaged in a Strategy Session

Pictured above Ann Brazeau, CEO, MPN Advocacy & Education Int'l with MPN Alliance Australia members.

Australian and American MPN Specialists Share  at a Workshop Hosted before the Patient/Caregiver Program

 

Clinical Trials and Research 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. 
 
Veterans and MPN Update
 
Please take a moment to read this important piece from the American Society of Hematology (ASH) regarding Vietnam veterans and blood disorders as a result of exposure to Agent Orange/Dioxin:

 
MPN Advocacy & Education International is currently collecting data from veterans regarding their exposure to Agent Orange and an MPN diagnosis. 

Pediatric MPN Update

The Pediatric MPN Patient Education Program scheduled for May 18, 2017 has been postponed until the Fall.  A new date will be posted soon.  For updates and information about pediatric MPNs go to MPN Advocacy & Education International's webpage.