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2018 Events
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Friday, April 27
Nashville, TN
Registration Open
Dr. Michael Savona
Dr. Brady Stein
Dr. Jennifer Powers
Ken Rosen
View Flyer
Thursday, May 31
Cleveland, OH
Cleveland Clinic
Registration Open
Dr. Aaron Gerds
Dr. Betty Hamilton
Dr. Kristen Pettit
Dr. Naveen Pemmaraju
Thursday, June 7
Pittsburgh, PA
Registration Open
Dr. Raajit Rampal
Dr. John Mascarenhas
Dr. Ellen Ritchie
Dr. James Rossetti
Dr. Salman Fazal
Friday/Saturday
September 28-29
Chicago, IL
28th
Women & MPN Conference
Dr. Laura Michaelis
Dr. Jamile Shammo
Dr. Gabriela Hobbs
Dr. Brady Stein
Dr. Robyn Scherber
Dr. Ellen Ritchie
29th-1/2 Day
MPN Pediatric/Young Adults
Dr. Nicole Kucine
Dr. Raajit Rampal
Dr. Linda Resar
Thursday,
November 8
San Mateo, CA
Dr. Raajit Rampal
Dr. Jason Gotlib
Additional speakers to be announce
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MPNs Explained in Spanish
For our Spanish-speaking patients, caregivers and health care teams, our Scientific Advisor, Dr. Ruben Mesa, UT Health San Antonio, has recorded a brief explanation of MPNs. Videos in other languages are in production.
Click image to view video
Did you know MPN Advocacy & Education International's website can be translated into many languages? Go to our website,
mpnadvocacy.com and select a language in the upper right corner.
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In the Trenches:
Dr. Fazal, MD
Vietnam Veteran's daughter tells her story
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Upcoming Support Group Meetings
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April 10
Idaho
April 16
Summit, New Jersey
April 22
Japan
Dallas/Ft. Worth
May 5
New Mexico
Indiana
May 17
Pittsburgh, PA
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Coping with Peripheral Neuropathy
Many MPN patients suffer from numbness and pain in their hands and feet (Peripheral Neuropathy)
Lifestyle choices can play a role in preventing peripheral neuropathy. You can lessen your risk for many of these conditions by avoiding alcohol, correcting vitamin deficiencies, eating a healthy diet, losing weight, avoiding toxins and exercising regularly.
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As new MPN treatment options gain momentum in clinical trials, change in ownership is inevitable. In this case, Impact Biomedicine's Fedratinib, a JAK2 inhibitor, was purchased recently by Celgene Corporation. In the wake of one door closing and another opening, friends and colleagues gathered in San Diego to help raise funds for MPN advocacy, education and research.
Over 200 guests came together at a local venue to kick up their heels to two bands, including the '90's' group Gin Blossoms.
The proceeds from this musical fundraiser will contribute greatly to projects and programs so critical to the future of MPN patients.
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Dr. Michael Savona, MD
Vanderbilt University
Medical Center
He is Director of Hematology Research, and Director, Hematology Early Therapy Program Vanderbilt-Ingram Cancer Center, and Associate Professor of Medicine, Vanderbilt University School of Medicine. Dr. Savona is a translational scientist and medical oncologist specializing in myeloid malignancies, and a leader in development of novel therapies for these diseases in patients. He has led the development and approval of several novel therapies targeting the proteosome, PI3 kinase delta, the JAK/STAT pathway, and various epigenetic agents. Dr. Savona has organized several hematopoietic repositories in the past. His laboratory focuses on human cell biology with primary patient samples, while examining novel compounds in hopes of advancing them to the clinic. Click below to learn more about Dr. Savona's current clinical trials and his research:
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A Patient Story: A Sharp Bounce to the Left
By Ken Rosen
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MPN Patient Ken Rosen
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If we think about why people like to watch college and professional sports, a couple reasons come quickly to mind: we like the competition, particularly if we are watching the home team; and we like to watch and argue about the strategic choices coaches make throughout the game.
But I believe a big reason that is not always conscious, is watching a player successfully make a seemingly impossible play. For example, when a baseball player is running to catch a ball in the outfield, and it takes a sharp bounce to the left, (to the fielder's bare hand), and, with an impossible twist of the body, the player is able to make the catch. This play is replayed over and over and discussed long after the game is over.
We are fascinated with the ability to adjust to sharp changes, in baseball and in life.
I have myelofibrosis (MF) and for about two years my hemoglobin levels have been excellent (surprising to my doctor).
Read More
Ken Rosen is a therapist and meditation specialist. He will be discussing his use of meditation to cope with his diagnosis at our Nashville Patient/Caregiver Program later this month.
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Vietnam Veterans: Update
Exposure to Benzene, a chemical used in jet fuel, can cause blood cancers and more specifically myeloproliferative neoplasms (MPNs). Currently, we are collecting proof that Agent Orange was sometimes mixed with jet fuels during the Vietnam War to thin the mixture and make it easier to spread. While there is existing research to prove a link between blood cancers and Benzene, the link to blood cancers and Agent Orange is not currently recognized by the VA. MPN Advocacy & Education International and Dr. Raajit Rampal will collect evidence to present to the VA that could ensure the addition of MPNs to their 'presumptive' list of service related illnesses as a result of exposure to Agent Orange. Updates will follow as they are confirmed.
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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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