2017 Events
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REGISTRATION IS OPEN FOR ALL EVENTS
Additional Speakers Being Confirmed
Novi, Michigan
Speakers
Dr. Anas Al-Janadi Dr. Kristen Pettit
New York City
Pediatric MPN
Speakers
Dr. Nicole Kucine
Dr. Raajit Rampal
June 9
Cleveland, OH
Speakers Dr. Raajit Rampal Dr. Aaron Gerds Dr. Ruben Mesa
Dr. Betty Hamilton
September 29
Los Angeles, Ca
Women & MPN
Speakers
Dr. Laura Michaelis
Dr. Jamile Shammo
October 26
Atlanta, GA
Speakers
Dr. Elliot Winton Dr. Laura Michaelis
Dr. Ruben Mesa
November 10
Washington, DC
S
peakers
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Srdan Verstovsek
Flyer
International
Friday, April 28 Melbourne, Victoria
Australia
For the full list of speakers view flyer
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Coming in next month's newsletter
In The Trenches:
Meet the Australian MPN Experts
Pediatric MPN
Research Update
A Patient's Clinical Trial Experience
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Upcoming Support Group Meetings
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Idaho-March 14
Pittsburgh-March 16
Indiana-April 3
New York City-April 20
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Mark your calendars for Friday, September 29, 2017 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
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Sexual Health After Transplant
Exploring
those uncomfortable questions
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Dr. Ann Mullally, MD
Brigham and Women's Hospital
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Dr. Ann Mullally
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Dr. Ann Mullally is an Assistant Professor of Medicine at Harvard Medical School and a physician-scientist at Brigham and Women's Hospital (BWH)/Dana-Farber Cancer Institute (DFCI). Her laboratory studies the genetics, biology and therapy of myeloproliferative neoplasms (MPN) using MPN patient samples, mouse models and multiple different laboratory approaches.
Dr. Mullally's MPN research interests include myelofibrosis, the biology of mutant calreticulin (CALR) in MPN, JAK2V617F MPN stem cells, improving the efficacy of JAK2 inhibitors and familial forms of MPN. The overarching goal of the research in her laboratory is to advance the understanding of the biology of MPN and to translate this into improved treatment options for patients dealing with these diseases.
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A Patient's Story: Susan Hill
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Susan Hill
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My journey with myelofibrosis (MF) began in 2001 when I was diagnosed just as I was celebrating my 60th birthday. The diagnostic process took several months of lab tests, x-rays, biopsies, etc. When the hematologist told me that I had MF, he said only that there was no cure and he would treat the symptoms. Later he added that MF was a "ten year disease." There was no patient education information, no suggestion of a second opinion, no explanations of the aspects and course of the disease. My knowledge of MF was only what I could find online. MF was one of the MPDs, myeloproliferative disorders, not yet classified as a cancer.
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Th
e Ultimate Blood Brothers
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Ron Anderson
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Ro
n
A
nd
erson, LA Support Group Coordinator,
received a bone marrow transplant eight years ago. His brother, a perfect match, was his donor. We asked his brother to share his experience as a donor.
Was there ever a time, once you knew you were a perfect match for your brother, that you thought you would not be his donor?
No, by the time my brother's doctor told him he needed a bone marrow transplant he was seriously ill and probably would not survive for very long without a total transplant. As it turned out, he and I have type A+ blood and, (thank God), I turned out to be a very good match for him. I just felt very fortunate that I would be a great donor and could help him.
When I told him I was willing to be his donor I thought I would be going into a hospital operating room and have doctors use needles to remove my marrow from my pelvic bone. Later, I found out about Peripheral Blood Stem Cells (PBSCs) and a process called apheresis (
a medical technology in which the blood of a person is passed through an apparatus that separates out one particular constituent and returns the remainder to the circulation.. My stem cells could be collected by drawing blood out of my veins, filtering them out and the rest of my blood would be given back to me. I was very pleased to learn about this nonsurgical method.
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Vietnam Veterans Update:
MPNs on VA's Agenda Finally
Ann Brazeau, CEO, MPN Advocacy and Education International, and Dr. Raajit Rampal, MD, PhD, Memorial Sloan Kettering Cancer Center, attended an "open" meeting held by th
e US Department of Veterans Affairs with the National Academy of Sciences' (NAS) Committee on Agent Orange and Health. The meeting, held in Washington, DC on March 1st, addressed myeloproliferative neoplasms for the first time ever. They are now being considered for further studies.
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Update: Joyce Niblack Conference
What'
s New in the MPN Mutation World
By Marina Sampanes Peed
The identifiers among people living with Myeloproliferative Neoplasms (MPN) are getting more complicated, thanks to all the discoveries in the last few years. We tend to identify ourselves with the current diagnosis and gene mutation(s) identified through bone marrow biopsy or blood tests.
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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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Pediatric MPN Event in NYC
Has your child been diagnosed
with an MPN - Myelofibrosis, Essential Thrombocythemia or Polycythemia Vera?
Are you a Young Adult with an MPN?
Join us in New Yo
rk Ci
ty on Thursday, May 18, 2017, for the first Pediatric MP
N Education Program. This will be a half-day afternoon program with MPN experts, Dr. Nicole Kucine, MD, MS, Weill Cornell Medicine and Dr. Raajit Rampal, MD, PhD, Memorial Sloan Kettering Cancer Center. Additional speakers are being confirmed.
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