May 2017  
            The MPN Community Connection 

  Educating and Advocating on behalf of those affected by myelofibrosis,
polycythemia vera, and essential thrombocythemia  
2017 Events

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

Dr. Ruben Mesa
Dr. Betty Hamilton
Amy Niles, PAN 

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

June 13
Indiana-July 11
North Dallas, TX-July 16
Pittsburgh, PA-July 20
Eugene, OR-July 23
New Mexico -August 5

Coming in September's
Highlights from Cleveland MPN Patient/Caregiver Program
From the Gymnasium
to the Bedside
Pictured above, our scientific adviser,  
Dr. Ruben Mesa    
showing an early interest 
 in hematology.  

Living in Paradox

Read  June's Blog

The Volunteer Paradox:

Why I 'm Addicted to Volunteering

 Visit our blog 

Reap the Health Benefits of Volunteering
The Happiness Effect :  
It comes from a release of dopamine in the brain. Just like a good workout, helping others has the same effect on the brain-so the more you volunteer, the happier you become!

Click Here to Read More
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The Many Faces of Volunteerism
By Ann Brazeau, CEO
I remember when I was in first grade, my favorite nun, Sister Mary Austin, asked us to (hand)write one paragraph on what we could do to help a family in the parish that had lost their home to a terrible fire.  One child died in the fire. She insisted that we think about being able to actually deliver what we proposed. I pondered the question for some time. At age six, grasping the magnitude of this loss was impossible.  I wanted to figure out what on earth I could do to ease their sorrow.  It occurred to me that maybe they would just like me to visit them once a week to replace the child they lost. I wrote my paragraph and embarked on my first experience volunteering. That simple gesture changed my childhood forever. I became a part of another family.

Now, I am proud to be a part of a much larger family, the MPN Community of volunteers.  This exceptional group of people volunteer tirelessly and sometimes while enduring their own health challenges. They listen, guide, and care for others.  Organizations have been built and maintained by volunteers.  Countless hours have benefited the Community in so many ways. This month, we want to thank those volunteers and remind them how valuable they are to all of us.

Thank you to each of you and to all the others not pictured.
In the Trenches: 
Dr. Aaron Gerds, MD
Cleveland Clinic

Dr. Gerds, MD
Dr. Gerds i s Assistant Professor in Medicine (Hematology and Medical Oncology) at the Cleveland Clinic Taussig Cancer Institute. He serves as the principle investigator for a number of clinical trials for the treatment of MPNs, and is focused on developing novel therapies for these patients.
Dr. Gerds completed his hematology/oncology fellowship at the University of Washington, Fred Hutchinson Cancer Research Center. During his fellowship, he was awarded the ASBMT's New Investigator Award. Under the mentorship of Drs. Joachim Deeg and Bart Scott, Dr. Gerds subspecialized in treating patients with MPNs such as polycythemia vera (PV), essential thrombocythemia (ET), myelofibrosis (MF), as well as myelodsyplastic syndromes (MDS) and chronic myelomonocytic leukemia (CMML), with a special emphasis on allogeneic hematopoietic cell transplantation.
Dr. Gerds will present at our Cleveland Clinic MPN  Patient/Caregiver Event on June 9th
Dr. Betty Hamilton, MD
Cleveland Clinic
Dr. Hamilton, MD
Dr. Hamilton is an Assistant Professor of the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. She received her medical degree from the University of Chicago and internal medicine residency training at the Hospital of the University of Pennsylvania. She completed her hematology/ oncology fellowship at the Cleveland Clinic and subsequently joined as a Staff Physician in the Department of Hematology and Medical Oncology and Blood and Marrow Transplant Program here at the Cleveland Clinic. Dr. Hamilton's clinical and research interests are in the treatment of hematologic malignancies including acute leukemias, myelodysplastic syndromes and myeloproliferative neoplasms; specifically focusing on allogeneic hematopoietic cell transplant as a treatment modality. Her research is focused on improving outcomes post-transplant, specifically on complications such as graft-versus-host disease, as well as long-term follow up and survivorship. 
Dr. Hamilton will present at our Cleveland Clinic MPN  Patient/Caregiver Event on June 9th
A Patient Story:  Living 32 years with an MPN
MPN Patient Ron K.
Fortunately, my MPN journey has been a long one. I was first diagnosed 32 years ago and I now have post-Polycythemia Vera Myelofibrosis. Looking back it was almost archaic in nature. Today the progress has been immense on many fronts, not just in treatment, but with treating the patient as a whole. As many of you know, there is no exact recipe book for life with cancer and its treatment journey is unique.  My hope is that sharing some of my experiences may help someone else along the way. 
There is a quote by Albert Einstein that reflects my approach to my medical journey: Learn from yesterday, Live for today, Hope for tomorrow. The important part is to not stop questioning.   
Learn, Live, Hope - three good words for any cancer patient.
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 the latest. 
Veterans MPN Update
Please visit our website for updated information that will assist your application process to the VA for benefits regarding your MPN.