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

Thursday, May 18
1/2 Day Morning  
 New York City
Pediatric MPN

Dr. Nicole Kucine
Dr. Raajit Rampal
Dr. Linda Smith-Resar 
Friday, June 9 
Cleveland Clinic Cleveland, OH
Intercontinental Hotel 
Dr. Raajit Rampal
Dr. Aaron Gerds

Dr. Ruben Mesa
Dr. Betty Hamilton
Friday, Sept. 29 
Los Angeles, Ca
3rd Annual
Women & MPN Program 
Dr. Laura Michaelis
Dr. Jamile Shammo  
Thursday, October 26 
Atlanta, GA 
Dr. Elliot Winton
Dr. Laura Michaelis
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Anas Al-Janadi 
Friday, November 10 
Washington, DC
S peakers
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Srdan Verstovsek
Dr. Anas Al-Janadi

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 

Australian MPN Patient/Caregiver Program Updates

Pediatric MPN
Research Update

Upcoming Support Group Meetings 
Indiana-April 3
Idaho-April 11
New York City-April 20
Atlanta-April 23

Remembering Marjorie Anne Blocks

Visit our blog 
Springtime: A Season for Renewal and Growth

Clic k here 
Mark your calendars for 

Friday, September 29

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

The Magic of Mindfulness 
While Living with a Chronic Illness
  Practicing mi ndfulness can help you become more engaged in your daily activities and enable you to better appreciate life's pleasures as they happen. 
  Read More  
In the Trenches:
Dr. Anas Al-Janadi, MD
Michigan State University  
Dr. Anas Al-Janadi
In 1991, Dr. Al-Janadi received his Doctor of Medicine degree at Damascus University School of Medicine. After completion of medical school, he remained in Syria for three years to begin his residency at Damascus University Hospital. Because of the little resources in Syria in Hematology/Oncology, he came to the United States to advance his career.  He traveled to the Bronx, NY, where he completed his residency in internal medicine at St. Barnabas Hospital/Cornell Medical Center. 

Returning back to Michigan to be with family, friends and colleagues, he established himself in the East Lansing area. In June of 2006, he joined the Department of Medicine at MSU and accepted the permanent position as Chief of MSU Hematology/Oncology division in the Department of Medicine in the College of Human Medicine.  His strong desire to provide patients with cutting-edge treatment and advancing the field of oncology is reflective in the numerous clinical research studies he has served on as Principal Investigator. 

Dr. Al-Janadi gave two excellent presentations at the Michigan MPN Patient Education Program on March 30th. He will be joining us in Atlanta and Washington, DC. 
A Patient's Story: My Clinical Trial Experiences
At what point in your MPN diagnosis did you join a clinical trial?  What trial (drug) were you in?
I was diagnosed with PV in 2001.  Only on phlebotomy and 81mg aspirin until 2007 when I began Hydroxyurea because I turned 60 in 2006 and was now "high risk."  In 2009 my spleen was enlarging. I had been hearing that Interferon was best taken in the early stage of MF and might reduce myelofibrosis.  My hematologist advised me he would be having a trial with Pegasys (Interferon) and I should wait for that. I actually waited until 2012 when the trial became available.  I was  showing signs through bone marrow biopsies of secondary MF.

Did you feel as though you received accurate information getting into the trial?

Yes, I had been reading about Interferon treatment and knew I wanted to try it.  Perhaps I didn't know how quickly I could be removed from the trial because of my worsening symptoms.
What didn't you know going into the trial that would be useful for others to know or questions they might ask?

It would have helped to know at what point you may be pulled from the trial and what happens after you are removed.  Also, I did not know that the FDA could shut a trial down at any point due to adverse reactions to few patients.

    Marylin C. has been living with her diagnosis for many years.  She has graciously volunteered for trials not only for her own reasons, but for the sake of
MPN patients and their futures.
  Read more 
Join Us on Thursday, May 18th for the First Pediatric MPN Patient Education Program 
Has your child been diagnosed with polycythemia vera, essential thrombocythemia or myelofibrosis
Are You a Young Adult with an MPN?
This half-day m orning program at the Langham Hotel in New York City will feature the following experts: Dr. Nicole Kucine and Dr. Linda Smith-Resar focus on children and young adults with myeloproliferative neoplasms and Dr. Raajit Rampal sees a large cohort of younger MPN patients. 
    Dr. Kucine         Dr. Smith-Resar    Dr. Rampal 
Michigan MPN Education Program  
On Thursday, March 30th, MPN Advocacy and Education International hosted another quality MPN Patient Education Program in Novi, Michigan.  Our presenters addressed pertinent issues surrounding an MPN diagnosis: Dr. Al-Janadi discussed both Understanding MPNs and Living & Surviving with an MPN, Dr. Deol discussed the Role of Stem Cell Transplant in Management in MPNs and Dr. Pettit discussed Mangement of MPNs: Current Strategies and Future Directions. 
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. 
Vietnam Veterans Update: 
In an effort to collect valuable information that will help MPN Advocacy and Education International's cause with the US Department of Veterans Affaris and the independent study that will be conducted by Dr. Raajit Rampal at Memorial Sloan Kettering, we have devised a list of questions that will serve as an essential data source moving forward.

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