MPNforum Magazine

 Summer, 2015

(The new TSR-July-August is here.)

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Yes! We have an MPN Patient Advocate and she’s one of us… Dr. Margaret Warner, Zebra-in-Chief, steps up to the job. The long road from the Zebra Coalition to growing industry embrace of patient advocacy.  (The story is here .)

Margaret’s Story.

“It took me a long time to write this profile of myself because it forced me to re-live what has happened to me. That, in itself, is painful. As some fellow patients of rare diseases have done, I diagnosed my own case of Polycythemia vera. I wish I could tell you that I was a doctor who brilliantly discovered my problem. Sadly, I am a doctor who fought a system that mostly ignored me and doubted me.” (Margaret’s story here.)

This secret meeting is the most important MPN event of the year.  

As you read this,  they’re packing their bags and heading for airports across the United State and in Europe, headed for a non-descript office  in the American Midwest. Tomorrow and the next day this elite group will guide the future of MPN research.  What they decide will affect our treatment options.  No speeches, no workshops, no media, no hype. What’s really happening behind closed doors? (Michelle Woerhle tell us here)

Points of light:  We would be lost in darkness without them

Early morning coffee. Sitting on the worn porch steps in the new sunshine, air fresh still hung with dew.  This is normally a contemplative time.  But the morning’s emails jolted me awake.  Reports of people reaching out, terrified, newly diagnosed.  A father in despair, out of options,  contemplating suicide.. (Continue, here.)

Julie Libon, MF.  Take a hike! (Really, this weekend.)

 This Saturday, May 30 a little bit of MPN history will be written in an event designed to  help end myelofibrosis the best way we can. (Julie’s story.)

Bulletin:  Should Medicare cover MF stem cell transplant costs?  We only have 24 hours (May 29) to submit our comments. You can start here.

Why not to grow old (and poor) with MPNs, a frontline report   

The Fatigue Project — Co-morbidities, the drugs we take and their impact on MPN Related Fatigue; now you can read all about it in Blood.  

MPN Heroes 2015. Up, up and away.  It’s that time again 

Events: Mark your calendar, get out and meet some folks.  HikeMF,  May 30, 10:15-2:00, Sharon, Massachusetts, Details and Registration …Celgene’s Patient’s Partners event, “Inspiring Innovative Advocacy Ideation for the Next Decade” Chicago,  Friday, May 29.   11:00 am to 1:00 pm CT   Dress is casual   (312) 944-4100.…and here’s advance notice for a UK event:Living with MPN Day, 2015, London, November 14.

Quotables:  “The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue. Afflicted by studies with small sample sizes, tiny effects, invalid exploratory analyses, and flagrant conflicts of interest, together with an obsession for pursuing fashionable trends of dubious importance, science has taken a turn towards darkness.”   (Richard Horton in The Lancet, April, 2015.)

You can read the Stem Cell Transplant special issue of the Q … right here!   Plus Archives:   How I treat MPNs? …Silver, Mesa, Hasselbalch, Harrison … definitive paper on  Aspirin, Platelets and Thrombosis… by J.J. Michiels… Interferon instructions for my patients… H.C. Hasselbalch

The List and Map of 174 Patient-Recommended Hematologists –

The MPNclinics – 302 answers to 141 Patient questions… with Index

The MPN Genetics Network

The Catalog of MPNforum Articles. ..

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