June 2018      
The MPN Communi ty Connection

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

2018 Events
Registration Open 
 
Friday
September 28
Women & MPN Conference
Chicago, IL

Dr. Laura Michaelis
Dr. Jamile Shammo
Dr. Gabriela Hobbs
Dr. Brady Stein
Dr. Robyn Scherber
Dr. Ellen Ritchie
Dr. Alison Moliterno

Saturday 
September 29
MPN Pediatric/ Young Adults Conference

Dr. Nicole Kucine
Dr. Raajit Rampal
Dr. Linda Resar

Thursday, 
November 8
San Mateo, CA

Dr. Raajit Rampal
Dr. Jason Gotlib
Dr. Ruben Mesa
Dr. Michael Savona
Dr. Laura Michaelis
Dr. James Rossetti
Additional speakers to be announce


Coming in September's Issue

EHA Updates

Pediatric MPN News

Chicago Patient Programs:
Women & MPN
Pediatric MPN

Upcoming Support Group Meetings 

June 16
Nagoya-Japan

July 22
Greater Atlanta MPN Picnic

August 5
Dallas-Ft.Worth, Texas

Staying Healthy as a Caregiver
 
One of the best things a caregiver can do for themselves is to take time for themselves.

Eat a heart-healthy diet

Take time every day to do    something you enjoy

Keep humor in your life
 
Get away-even for an hour

Treat depression seriously

Keep your medical appts

Try to stay positive

Keep connected to the outside world
 
Click here to learn more

From Cleveland to Pittsburgh:  A Busy Travel Schedule Worth Every Minute
Cleveland
MPN Advocacy and Education International hosted its 3rd MPN Patient/Caregiver program at the Cleveland Clinic on May 31.  Dr. Aaron Gerds presented information on two MPN topics, Symptom Burden and MPNs 101. Dr. Gerds helped explain the biology of MPNs and likened the JAK2 mutation to a broken thermostat. In this case, constantly triggering the body to turn up the heat.   Read more 

From Left, Dr. Aaron Gerds, Dr. Naveen Pemmaraju, Dr. Kristen Pettit, and Dr. Betty Hamilton

Pittsburgh
On June 7, MPN Advocacy & Education International held its first MPN Patient/Caregiver program in Pittsburgh. Support Group Coordinator, Jean Diesch, invited us many times and we were finally able to make it happen. Two local hematologists, Drs. Fazal and Rossetti joined Drs. Rampal and Mascarenhas for this program.  Read more 

Top Left, Dr. James Rossetti, Support Group Coordinator Jean Diesch with Ann Brazeau, Dr. Salman Fazal with Dr. John Mascarenhas and Dr. Raajit Rampal

In Memoriam
 
Idaho MPN Support Group Coordinator, Susan Hill, passed away on M ay 31. Susan was a friend and constant supporter of our efforts. Her courage and zest for life were contagious. Susan will be greatly missed by us and all those she touched in the MPN community.  view obituary
In the Trenches: 
A Mother's Story: Coping with a Sick Child

By Sarah W.
Young MPN patient  "Jedi" with his companion Chewy
I n the opening credits of the television show "The Fresh Prince of Bel Air" Will Smith sings, "This is the story/all about how/my life was turned/upside down." This article is the story all about how OUR lives were turned upside down when our son, who we affectionately refer to as a "Jedi" because of his special blood, was diagnosed with a Myeloproliferative Neoplasm (MPN).

Our story is probably different from other adults/children with an MPN because Jedi wasn't extremely sick before we discovered he had an MPN. 
Clinical Trials-News 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. 
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