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

September 29 
Los Angeles, Ca 
3rd Annual
Women & MPN Program 
Dr. Laura Michaelis
Dr. Jamile Shammo
Dr. Robin Scherber
Dr. David Snyder
Dr. Ellen Ritchie 
October 26 
Atlanta, GA 
The Georgian Terrace 

Dr. Elliot Winton
Dr. Laura Michaelis
Dr. Raajit Rampal
Dr. Anas Al-Janadi 
November 10 
Washington, DC 
S peakers
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Srdan Verstovsek
Dr. Wendy Bernstein 
Upcoming Support Group Meetings 

September 10
Tokyo, Japan
Japan MPN Day

 September 12
Meridian, Idaho

September 23 San Francisco, CA
Annual MPN Bay Area Conference  
September 26
Summit, NJ

October 23
North Dallas, TX

In Memory of Barbara Boyles

Thank you for your courage and commitment to the entire MPN Community.   
Coming in October's
Highlights of the 3rd Annual Women & MPN Conference

Intimacy Health 
People with chronic illnesses and/or disabilities have the same desire for intimacy and sexual fulfillment as anyone else. All too often, however, others think that chronically ill people are uninterested in sex, unable to have sex, and/or simply feel undesirable. While there may be some truth to those ideas in some cases, chronically ill people are still human beings who have sexual desires and abilities.  
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Growing MPN Awareness:  3rd Annual Women & MPN Program     
For MPN Adv ocacy & Education International growing awareness is what we do on a daily basis.  We use every avenue available to us to ensure pa tients, caregivers and all those affected by MPNs are aware of the resources available to them.   

This month, MPN Advocacy & Education International will host its 3rd Annual Women & MPN program in Los Angeles.  we are very proud to have helped so many women with myelofibrosis, essential thrombocythemia and polycythemia vera.  Our program will focus on intimacy issues and updates on all pertinent MPN information.

Intimacy and MPNs
By Ann Brazeau, CEO
Over the last few years, with the creation of the Women & MPN programs, a vocal patient advocacy network and focused research, we've discovered t he differences in how men and women are impacted by  MPNs. Click here to learn more about the Women & MPN initiative.

Many women have expressed their discomfort discussing intimacy and sexual issues with their physicians. Some physicians have told us that little training in sexual health and intimacy are available, yet it can be the one thing that bonds the patient and their partner in a positive way.  MPN studies placed intimacy as a major quality of life issue. While patients receive information and guidance on diet, exercise, treatment options and other healthy lifestyle choic es, rarely is intimacy o r sexual health discussed.  
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Dr. Laura Michaelis, MD, has answered a few of the intimacy questions submitted by female MPN 

How do I know if I'm having ET symptoms or menopause symptoms, i.e. night sweats, foggybrain etc.?

There is no one answer for this - and many of the symptoms of essential thrombocythemia may be confused with "normal" symptoms of menopause. However, there are some tell-tale signs that ET is the root cause.
In the Trenches: 
Dr. Ellen Ritchie, MD
Weill Cornell Medical College 
Dr. Ellen
Ritchie, MD
Dr. Ritchie is assistant professor of medicine and a member of the Leukemia Program at the Weill Cornell Medical College of Cornell University and the New York Presbyterian Hospital in New York City.

Dr. Ritchie's research interests are in the treatment of older patients with anemia, cytopenias, myelodysplastic syndromes, myeloproliferative disorders and acute leukemia. She is interested in finding better therapies and supportive care strategies for older patients. Dr. Ritchie is the principal investigator on clinical trials investigating new diagnostic techniques, supportive care strategies and therapeutics aimed at the older patient. 

Dr. Ritchie will present at our Women & MPN Conference Patient/Caregiver Event on September 29th.
Attention Vietnam Vets with MPNs
The Veterans Administration continues to work with MPN Advocacy & Education International in our pursuit of adding myelofibrosis, essential thrombocythemia, and polycythemia vera to the 'presumptive' list of illnesses related to Agent Orange exposure. After three years of discussions and presentations on behalf of Vietnam Veterans, we are making greater progress. We have been invited to another meeting and are told that MPNs remain a priority in placement on the list which would ensure full benefits and compensation to all Vietnam Veterans with an MPN diagnosis. We will continue to keep you updated.  
MPN Advocacy & Education International, CEO, Ann Brazeau, was recently interviewed by Cure Magazine to discuss the effort to put MPNs on the VA's presumptive list
A Veteran's Story Told by  his Wife
Bill C.- Veteran and MF Patient
In January 2017, my husband, Bill, was enjoying his consulting business and writing a book that has been in his mind for years, when an annual physical changed everything.  Some lab work was "off" according to the Veterans Administration (VA) physician so Bill sent the lab results to our personal physician, who is also our best friend. Within ten minutes after receiving it, our friend asked Bill to come to his clinic immediately.    
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).