December 2018      
The MPN Communi ty Connection

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

2019 Events

February 7
Tampa, Florida
Speakers:
Naveen Pemmaraju, MD

Additional Speakers TBD

May
New York City, NY
John Mascarenhas, MD

September
Women & MPN

October
Australia

Additional Events

Dallas, TX

Women & MPN

Pediatric & Young Adult MPN Program

Details to be 
announced soon
Coming in January's Issue

Overview of 2019 Patient/Caregiver Events

 A Patient Story 

Upcoming Support Group Meetings 

December 11
Idaho

December 15
Indiana

December 17
New Jersey

December 22
Fukuoka City, Japan


How to have a Peaceful Holiday Season


Many people find that the holiday season brings as much stress as it does joy. For those with a chronic illness, controlling your stress is an important part of your health and well being. The use of meditation is becoming a more mainstream tool for helping patients to get their symptoms, and the stress caused by them, under control.

Meditation helps to train the brain to be more present and focused, so patients who meditate don't anticipate pain. This helps reduce anxiety, depression, and insomnia.

If you aren't sure how to start, one of the following apps could prove useful (click the name to learn more):

Some of the above apps are free and others cost to use, but allow you a free trial.  

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2018 ASH Updates 

MPN Advocacy & Education International traveled to San Diego at the beginning of the month for the 60th annual meeting of the American Society of Hematologists (ASH). Nearly 30,000 hematologists, researchers and other health care professionals gathered to hear the latest developments related to research, clinical trials and novel therapies that could impact treatment options for MPN patients. 

Below Dr. Ruben Mesa, Director of UT Health San Antonio, and MPN Advocacy & Education International's Scientific Advisor, offers a brief summary of MPN news at ASH. The links below provide just a handful of the MPN-related papers and abstracts presented.

ASH Highlights for MPNS:



Making the Most of Social Media
 
After attending the ASH event in San Diego, it was clear how the use of social media has influenced the medical community. It was the subject of one session at ASH, chaired by MPN specialist, Dr. Aaron Gerds, Cleveland Clinic Taussig Cancer Institute. Both doctors and patients are struggling with the wise-use of social media. While Facebook appears to be the preferred source of information and support for MPN patients. Twitter is the primary tool for doctors and researchers to communicate on a broad scale. It creates a quick and easy way for doctors to reach out to peers and patients alike, and includes links to valuable information that patients may not otherwise have access to without extensive google searchers.

Regardless of your social media source, it is wise to proceed with caution. Not everything you read applies to your particular situation, diagnosis, symptoms or treatments. In response to feedback from concerned patients regarding the use of Facebook for medical information, MPN Advocacy and Education International talked with Dr. Naveen Pemmaraju, MD Anderson Cancer Center, who has researched the use of social media as a medical professional and offers his advice on how to interact responsibly with social media.   Read more

Click image to view video

In the Trenches: 
Dr. Stephen Oh, MD, PhD
Washington University School of Medicine
 St. Louis, MO

Dr
Dr. Stephen Oh, MD, PhD
. Stephen Oh is Assistant Professor in the Division of Hematology at Washington University School of Medicine in St. Louis. Dr. Oh heads a translational research group focused on the pathogenesis of myeloproliferative neoplasms (MPNs) with the goal of translating the work into improved therapies for MPN patients. He completed his MD and PhD at Northwestern University's Feinberg School of Medicine in Chicago, Illinois. Dr. Oh went on to complete a residency, fellowship and postdoctoral fellowship at Stanford University School of Medicine in Stanford, California. Dr. Oh is a Myeloproliferative Neoplasms Committee Member for the National Comprehensive Cancer Network.

Click below to view Dr. Oh's MPN abstracts submitted at ASH:
Explaining MPNs in Many Languages

In an effort to meet the needs of our global audience, MPN Advocacy & Education International has created a slide on our website where visitors can hear an overview of MPNs from leading MPN specialists in multiple languages. Currently Available:

Dr. Ruben Mesa-Spanish
Dr. Alessandro Vannucchi-Italian
Dr. Anas Al-Janadi-Arabic
Dr. Salman Fazal-Urdu

Additional languages will be added throughout the upcoming year. The entire MPN Advocacy & Education International website, mpnadvocacy.com, can be translated to multiple languages by clicking the translator option at the top right corner.