Science & Medicine



Here is your Advance Copy of MPNforum.  (The “Return to home” link won’t work until after 5 PM)






Where do we get our MPN care? What role do specialists play? How is our therapy impacted? Answer the quick two minute MPN Patient Care Survey and help clarify the picture.

The Survey ends this Wednesday at 5 PM so act now. And thank you, (No identifying data collected.)






Doctors drive our treatment options. We’ve got a rare disease. MPN specialists are even more rare. So who do we see to check our blood counts, monitor our condition, plan our therapy?

Please take this 2 minute survey. It’s part of the work being done by the MS3T Taskforce exploring timing of therapeutic options,  a project sponsored by the MPN Research Foundation.  Full results  published July 19.

And thank you,







On Jakafi mutations …A confession.

The MPNforum Special Report raising questions about Jakafi and the emergence of deadly mutations created concern, awareness, panic.  It wasn’t supposed to be like that. It was a factually true Report, fully vetted by the experts.  But it wasn’t even mostly about mutations.

Here’s the confession:

And an apology.


Special Report:

Jakafi and the evolution of deadly mutation



There is a smoking gun, but no fingerprints. Clonal evolution means emergence of new mutations.  In Jakafi therapy.the numbers are chilling.

This is the story of the hidden menace behind the life saving face of Jakafi..a true Janus mask.



To finish the work



Without him.


The true leader of our MPN world has gone.

Camera shy, avoiding personal publicity, his relentless pursuit of a cure for MPNs is largely unrecognized.

And yet he has been the driving force behind virtually every therapeutic and scientific advance we’ve enjoyed for the past decade.

Before leaving, he opened new research lines that are only now being explored. And he left us the infrastructure that can take us all the way to a cure.

What remains is for us to roll up our sleeves and help finish the work he began. He has shown us how. (Story here).




Ellen’s back and she brought us a fresh update (December 26, 2017) of the List.

Now 273 Patient-recommended hematologists from 23 nations and 41 states.

You can find it here.

And best wishes from all of us at MPNforum for a Happy, peaceful and creative New Year.



%d bloggers like this: