International MPN News, Science & Opinion

October-November…The Jakafi Report

October 15, 2012, Vol. 3  No.2

         First Jakafi Field Report…MPNclinic… features…columns…stories…and news

The Jakafi Report.....  Now that Jakafi has found its ways into the medicine cabinets of MF patients, what has been the impact? Here’s a report from the front lines of MPN therapy… 23 patients share their direct experience as the first group to use Jakafi since FDA.EMA approval. The dramatic results might surprise you.. (Read more.) 

The MPNclinic…

Seven leading MPN physicians and scientists answer urgent questions from 30 MPN patients…(Read more) 

About Jenny… by Denise Parker...  “I am bursting with pride to tell you about our beautiful (inside and out), kind, caring, tenacious, brave and sweet daughter….. Our story is one of hope, a legacy left by a young woman whom we watched preciously guarding every breath in her body. Her legacy is still unfolding. (Read more)  

Bente‘s Story by Bente Evadatter.... PV in Norway…”I had nobody within the medical profession to help me cope; I had nobody to talk to about all this. After leaving the teaching profession, many of my colleagues and friends I’d made over the years disappeared partly from the lack of communication since I’d moved into a new profession, and probably partly because I became incapable of socializing as I’d done prior to the onset of PV. Whatever the reasons, this loss left me… more isolated.” (Read more) 

“Pay for something that’s Free?…That’s just plain crazy.”  Still there comes a time when computers break down, operating costs go up and winter is coming on that you have to do something.  why not ask friends to be a little crazy….(Here’s the story)

News Briefs  Bingo! 23andMe hits paydirt!...  “It’s premature to equate this SNP finding with discovery of the JAKs V617F mutation but it does seem to open a significant new pathway to exploration of genetic causes of MPNs.  And the fact that it was done so quickly, even before the MPN database was fully powered, is promising.”.. The Grandmother of all MPN Conferences…If you plan to be anywhere near Phoenix in February, there’s still time to register for the MPN Education Foundation/Mayo Clinic Arizona Patient Conference…This  conference is  the direct descendant of the first such gathering organized by the iconic Dr. Harriet Gilbert and Joyce Niblack … (Go to News Briefs)

Plus What’s Cooking?
Healthy, hearty recipes from the MPN Kitchen  

Columnists:  Dr. Arch On the care of a reluctant patient.. Michael Goldstein On the importance of a Coach  Harvey Gould  On becoming a full-blooded Irishman … Jeremy Smith On keeping an open mind  And  introducing Nathalie Cook’s Food for Thought….

The List of Hematologists... The Catalog of Articles

The October, 2012 Masthead

Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNForum articles or write your own story or Open a discussion with your…                       Letter to the Editor..

For information 

contact: ourMPNforum@gmail.com

   

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