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2019 Events
February 7
Tampa, Florida
Speakers
Dr. Naveen Pemmaraju, MD
Dr. Andrew Kuykendall, MD
Dr. Kristen Pettit, MD
Dr. Taiga Nishihori, MD
April 12
Dallas, Texas
Speakers
Dr. Srdan Verstovsek, MD
Dr. Ruben Mesa, MD
Dr. Jeanne Palmer, MD
Dr. David Snyder, MD
May 16
New York City, NY
Pediatric MPN Program
Speakers
Dr. Nicole Kucine, MD, MS
Dr. Linda Smith-Resar, MD
New York City, NY
Speakers
Dr. John Mascarenhas, MD
September 6
Boston, MA
Women & MPN Conference
Speakers
Dr. Laura Michaelis, MD
Dr. Gaby Hobbs, MD
Dr. Ellen Ritchie, MD
Dr. Michele Couri, MD
October 18
Melbourne, Australia
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View Event Details |
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Coming in February's Issue
In the Trenches:
Dr. Taiga Nishihori, MD
Moffitt Cancer Center
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Upcoming Support Group Meetings
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January 17
Pittsburgh, PA
January 27
Eugene, OR
January 28
Whippany, NJ
February 9
Houston, TX
February 10
Shizuoka City, Japan
Early March
Grand Rapids, Michigan
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Approaching New Year's Resolutions for a Healthier Outcome
The new year brings with it the hope for new beginnings. Many people make resolutions or pledges to be healthier. And while living a healthy life is a great way to lower your symptoms from a chronic illness, some experts believe that a resolution may not be the best way to do that. Be proactive about your resolution, be prepared and have support system.
(MD Anderson Cancer Center)
Prepare a script:
K
now exactly what to do when you get tired in the mid-afternoon and your brain tells you that you don't need to exercise. What do you say to your brain?
Create a strategy:
Strategy means making a plan. Try bringing an apple to work each day for a snack so you go for that instead of those cookies in the break room.
Build social support:
Social support means talking to your friends and family and asking them for help.
It's important to take New Year's resolutions slow. Start with self-understanding, develop some skills, plot some strategies and recruit some social support. Learn more
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Where We're Going in 2019
MPN Advocacy & Education International is looking forward to another robust year as we plan for six patient/caregiver programs across the country and two to three internationally. Invitations to return to some cities are hard to ignore when growing populations of MPN patients attract attention from
 hematologists.
Thus, we will return to the Tampa Bay area after three years. First time speakers for MPN Advocacy & Education Int'l from Moffitt Cancer Center, Drs. Andrew Kuykendall and Taigi Nishihori will present on
Prognostication in MPN
and
What You Need to Know about Stem Cell Transplants.
Additionally, Drs. Naveen Pemmaraju, MD Anderson Cancer Center and Kristen Pettit, University of Michigan Medicine, will join us once again to bring updates on
Going Beyond JAK Inhibitors: Novel Agensts and Review of ASH 2018
and
MPN Clinical Trials 101.
Our
2nd Annual Pediatric & Young Adult Program will be held in New York City, May 16th, the day before a general, full-day event. The
5th Annual Women & MPN Conference will be held in Boston.
We look forward to hearing from dedicated physicians and researchers who devote their time and care to this patient population.
PLEASE NOTE: Anyone with a financial hardship may attend any and all programs for free.
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Dr. Andrew Kuykendall, MD
Moffitt Cancer Center
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| Dr. Kuykendall, MD |
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Dr. Andrew Kuykendall, MD, is an Assistant Member in the Malignant Hematology Department at H. Lee Moffitt Cancer Center & Research Institute and an Assistant Professor in the Department of Oncologic Sciences at the University of South Florida (USF).
Dr. Kuykendall has authored multiple peer-reviewed manuscripts related to myelofibrosis, has presented at national and international conferences, and co-authored multiple book chapters on myelofibrosis and other MPNs. He was selected to participate in the 2018 AACR/ASCO Methods in Clinical Cancer Research Workshop in Vail, Colorado. He has received multiple internal grants for translational research projects focusing on myeloid malignancies and has served as a peer reviewer for Leukemia. Dr. Kuykendall focuses his research early phase clinical trials in MPNs, with a specific focus on agents that hold disease-modifying potential. Additionally, he performs retrospective analyses of myelofibrosis patients with an aim to better understand the differential impact of clinical and molecular features in a notoriously heterogeneous disease. (View clinical trials at Moffitt Cancer Center)
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A Mother's Story: Children DO Get MPNs
Our Loss May Save Your Child
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| In memory of Jordan |
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In 2014, our daughter Jordan, age 14, complained of headaches and neck pain. Ultimately the doctors diagnosed her with mastoiditis, with a rare complication of cerebral venous sinus thrombosis (a 5% chance of that complication). The doctors then fixated on a diagnosis of migraines before, during and after shunt evaluations, placement and revisions.
In January 2015, unbeknownst to us, one doctor mentioned polycythemia vera as a possible diagnosis. He requested a hematology consult, but no action was taken.
Due to the CVST, Jordan developed papilledema and required shunting due to intracranial hypertension. She was at risk of losing her vision.
Jordan suffered from headaches, nausea, vomiting, blurry vision, joint and bone aches and pains, and itching which was diagnosed as an allergic reaction to medication she had taken. Nobody looked at the bigger picture. One doctor said her issues were the result of complications due to migraines. After which, every other doctor followed suit despite the symptoms, abnormal imaging, and abnormal lab results. All of this happened over a three year period.
In February 2018, Jordan, now 17, was diagnosed with portal vein thrombosis. Her symptoms remained unchanged for three years, yet the doctors still fixated on migraines. At this point, I started doing my own online research and requested testing for polycythemia vera (PV). We were told by a hematologist that tests including a bone marrow biopsy, were not necessary as her labs were normal. They were not. She was reluctantly tested for the JAK2 mutation on February 21, 2018. Nobody read the results.
Read More
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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).
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