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2017 Events
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Friday
November 10
Washington, DC
S
peakers
Two New Lab Concepts: Future Clinical Trials
Dr. Raajit Rampal
MPN Scientific Journey: 2005-2017
Dr. Srdan Verstovsek
MPN Case Studies
Dr. Wendy Bernstein
Living & Surviving with an MPN
Dr. Anas Al-Janadi
Amy Niles, PAN Foundation
Flyer
2018 Events
Saturday
February 24, 2018
San Antonio, Texas
Speakers
Dr. Ruben Mesa
Dr. Jason Gotlib
Dr. Robyn Scherber
Dr. Laura Michaelis
Dr. Willis Navarro
Dr. Jeanne Palmer
March
San Mateo, CA
April
Nashville, TN
May 31
Cleveland, OH
June
Pittsburgh, PA
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Living in Paradox
by Marina S. Peed
November :
You Are Not Alone
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Coming in December's
newsletter
ASH Updates
Highlights from Washington DC Patient/Caregiver Program
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Upcoming Support Group Meetings
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November 4
New Mexico
November 14
Idaho
November 16
Pennsylvania
November 18
Tokyo, Japan
Tennessee Support Group Forming contact us for details
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Staying Healthy with the Help of Apps
Mobile phone apps are quickly becoming a valuable resource for patients and caregivers as they navigate the journey of living with an MPN.
Below are a few apps that reviewers have found helpful for patients with chronic illnesses
(click on the image
to learn more):
Ask the Nutritionist
Dana-Farber Cancer Institute created this app to help you find recipes for staying healthy, getting you through treatment, and living and eating healthy.
Loving Meditations to Bring Calm to Cancer
Medisafe Pill Tracker
MediSafe is intended for patients who are on multiple medications for chronic diseases and who have a hard time complying with their prescription medications.
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Atlanta: Interesting Speakers Share Valuable Information
Last week, we hosted another MPN education program in Atlanta. Being in Atlanta was a bit nostalgic and heartwarming. Bonnie Evans, longtime partner and caregiver to Joe (now deceased), spoke about why she became involved on a grander scale in the MPN community. The Atlanta support group, founded by Bonnie, is still going strong. Marina Peed shared her experiences and journey as a patient and transplant survivor. Her unique challenges and ultimate cure led her to a new role as a strong advocate for MPN patients.
Dr. Jennifer Powers, a pharmacologist and MPN patient, imparted valuable information for those struggling with insurers and outlined the benefits of specialty pharmacies.
(Click here to read MPN Advocacy & Education International's Associate, Marina Peed's summary of Dr. Power's presentation.)
Maria Hanik gave an informative overview of the BMT program at Northside Hospital Cancer Institute. Our clinicians and researchers, Drs. Rampal, Michaelis and Winton shared updates on current clinical trials, what MPNs look like and how the body reacts to polycythemia vera, essential thrombocythemia and myelofibrosis. The feedback we hear from patients after each educational program fuels our commitment to continue providing the best possible events and resources available.
Pictured above, top row, Dr. Michaelis, Dr. Powers, Ann Brazeau and Bonnie Evans, bottom row Dr. Rampal
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MPN Horizons Meeting in Frankfurt, Germany
The 2nd annual MPN Horizon's meeting took place in Frankfort recently. Our ambassador and associate, Marina S. Peed, not only represented MPN Advocacy and Education International, but was asked to present. Marina blogged about her experience,
click here to read more.
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Dr. Wendy Bernstein, MD
Walter Reed Medical Center
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| Dr. Berstein, MD |
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Dr. Bernstein, MD, is a staff oncology and hematology physician and Chair of Scientific Review for the Department of Research Programs at Walter Reed National Military Medical Center. She is an Associate Professor of Medicine, and an adjunct Associate Professor of Pharmacology and of Microbiology at the Uniformed Services University of the Health Sciences (USUHS). Her research activities center on immune reconstitution and use of CAR-T cells in HIV infection. Dr. Bernstein is a 28-year veteran of the US Army Medical Corps, from where she retired with the rank of Colonel. She received her M.D. from USUHS and is Board certified in Internal Medicine, Hematology and Oncology.
Dr. Bernstein will be presenting at our MPN
Patient-Caregiver Program on November 10 in Washington, D.C.
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The  guidelines are intended to offer patients a comprehensive understanding of myeloproliferative neoplasms. It covers basic explanations of essential thrombocythemia, polycythemia vera and myelofibrosis as well as
complicated decision-making related to the diagnosis, supportive care and available resources.
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MPN Research Foundation's Progression Marker Project: Your Participation Can Make a Difference
"We need rigorous data to move physicians away from 'watch and wait' to treatment strategies based on an understanding 'why, how and when' people with MPNs should be treated. The Progression Marker Project is designed to provide us with this essential yet missing data."
Dr. Srdan
Verstovsek, MD Anderson,
Principal Investigator
MPN Advocacy & Education International strongly supports this research project, which is a multi-year project that would collect samples and data from patients, using both their electronic medical records and their own self-reported experience with symptoms through the Foundation's patient registry. The one question patients ask us most often is "Will my MPN progress?" The great fear and anxiety of disease progression is very real.
This timely and important project needs support from the entire MPN community.
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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).
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