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2017 Events
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Speakers
Dr. Elliot Winton
Dr. Laura Michaelis
Dr. Raajit Rampal
Dr. Anas Al-Janadi
Maria Hanik, DNP, APRN-BC
Jennifer Powers, PharmD
Friday
November 10
Washington, DC
S
peakers
Dr. Ruben Mesa
Dr. Raajit Rampal
Dr. Srdan Verstovsek
Dr. Wendy Bernstein
Amy Niles, PAN Foundation
Flyer
2018 Events
San Antonio, Texas
Pittsburgh, PA
San Mateo, CA
Nashville, TN
Cleveland, OH
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Upcoming Support Group Meetings
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October 10
Idaho
October 23
North Dallas, TX
November 5
Indiana
November 18
Tokyo, Japan
Tennessee Support Group Forming contact us for details
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Coming in November's
newsletter
Highlights of the Atlanta Patient Education Program
In the Trenches:
Dr. Wendy Bernstein, MD
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Fighting Fatigue
90 percent of MPN patients are affected by fatigue
70 percent of MPN patients claim it impacts their daily life
The majority of MPN patients who exercise find it successful in battling fatigue
Other successful
activities include:
Music
Reading
Spiritual Activities
Yoga/Meditation
Dr. Robyn Scherber, MD presented on the MPN Fatigue Study at the 3rd Annual Women & MPN Conference
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3rd Annual Women & MPN Conference Brings New Patients with Familiar Issues
We are pleased to have completed the 3rd annual Women & MPN conference on Friday, September 29th, in Los Angeles. We had wonderful speakers and a lively panel discussion on issues impacting women and all those living with MPNs. One recurring theme was revealed by the newly diagnosed attendees; their physicians didn't seem to know a lot about their ET, PV or MF and gave little support or direction to resources.
Read more
Videos of Speakers Available this Week
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MPN Advocacy & Education International was invited to attend a very important and timely meeting with the FDA last month. The invitation was extended to us and a few other MPN focused organizations. This meeting launched a unique beginning for those of us representing the MPN Community.
The FDA's newly formed Oncology Center of Excellence and the Office of Patient Outcomes are committed to engaging MPN patients and advocates to better respond to the need for quality treatment options.
Among the many topics presented by their hematologists, researchers and cancer patient liaison, was an in depth explanation on drug approval processes and how valuable and critical the patient's voice is to their mission.
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Dr. Elliott Winton, MD
Emory University Hospital
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Dr. Winton, MD
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Dr. E
lliott Winton specializes in the treatment of acute my
eloid leukemia, myelodysplastic disorders, rare myeloproliferative disorders and myeloproliferative neoplasms. Dr. Winton conducted the first bone marrow transplant at Emory University Hospital in 1979. Since that first transplant, Dr. Winton and the BMT team at Winship have made considerable contributions to continuing development of this process. Dr. Winton's primary clinical research continues to be focused on improving therapy for patients with myeloid malignancies. In recent years he has specialized in the non-BCR/ABL myeloproliferative neoplasms (MPNs) (polycythemia vera, essential thrombocythemia, myelofibrosis) as well as rare granulocytic neoplasias such as systemic mastocytosis and eosinophilia.
Dr. Winton will be presenting at our MPN Patient/Caregiver Program on October 26 in Atlanta.
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Does Your Child Have an MPN?
How to approach the conversation with your child's hematologist
By Dr. Nicole Kucine, MD, MS
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Dr. Kucine, MD, MS
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It can be difficult to know what to expect when your child is being evaluated for an MPN. There is limited guidance on the internet, which can make specialist visits overwhelming to families. As parents, you can expect that you and your child will be asked many questions about symptoms he or she might be having, including headache, abdominal symptoms, rashes, and itching. Your child will undergo a number of blood tests, including some genetic tests, as well as a bone marrow examination. Children who are having symptoms specific to a certain body area may need radiologic tests (such as an ultrasound or MRI.)
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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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