March, 2014
In this issue: Online Fatigue Project ready to roll… MPNclinic: But is it Cancer? … the Imetelstat road show: Tefferi speaks… Harvey hits wall on winding road…Foundation bets big on MPN science in 2014 challenge… TSR… The List
Myeloproliferative Neoplasm Related Fatigue
Story, link to power tool click here.
Message from the Mayo Clinic click here
A crammed full issue as Winter melts into Spring…
Big news is the historic fatigue intervention study that holds so much promise for us is now available…. The MPNclinic is back in session here… and an unofficial survey of MPN pages on Facebook turns up some old time good times…Then there’s the first hand report on the Imetelstat road show as Tefferi and company ramp up for clinical trial…Harvey reports in from his ICU bed, reminding us how risk and courage are an integral part of our world, even when we don’t have his sense of humor… and a first ever publication of the MPNRF’s Request for Proposals from the folks who brought us everything from JAK2 to CALR. Enjoy!
– Zhenya Senyak
But is it cancer? — The MPNclinic answers patient questions…
What is unquestionably the highest powered group of MPN specialists on Planet Earth assembles again to field an array of questions
for MPN patients worldwide. Listen in. (Full Clinic Q&A, click right here)
MPN likes FACEBOOK – A Survey
What drives patients to create a dozen or more Facebook pages… and what’s the real impact of all the time we spend posting, responding, 
liking and friending on one or another Facebook page? (Click here to like or just read)
The Imetelstat Road Show – Tefferi speaks
The clinical trial is still just a well-substantiated rumor, but Dr. Ayalew Tefferi is out talking up the virtues of Imetelstat. 
This time he brought along a witness and our ace reporter, Jeremy Smith, was on hand to cover the proceedings. (The story is here.)
Harvey hits wall on long winding road...
What happens when a Boardwalk and Park Place kind of guy gets sent to Baltic Avenue for a spell…without passing GO? Harvey takes 
us on a spin along his long and winding road right into a brick wall and the ICU..and somehow makes the grim details material for a stand-up routine. ( For the current road trip episode, click here.)
The Foundation banks big on science — here’s the RFP for 2014.
When the group that funds the foundational science behind MPN therapies gets ready to hand out research grants, it’s well worth
having a look. Here’s the proposal request itself, a note from the Chairman, and a clear overview of some promising research areas. (Click here for the story and your copy of the proposal.)
TSR – The Senyak Report
… Zebra petition filed with FDA Commissioner MPNforum. After three intense weeks, the MPN community delivered a petition 
with 526 signatures to FDA Commissioner Dr. Margaret Hamburg and a cover letter requesting 
a meeting… Now, if we can get Frank Underwood on our side, we’ve got it made. (More in TSR)
Order your engineered T Cells from Amazon? The explosive growth of interest in CAR-T cancer drugs, genetically modified T cells a white blood cell that plays a major role in our immune system, got a further boost when Amazon’s founder Jeff Bezos plunked $20 million down to join other investors in biotech start-up Juno Therapeutics. (More in TSR)
Steensma : What if Edison were a cancer researcher?
OK, it may not be one those game changing scientific insights but for those of us waiting for salvation at the dripping end of the drug pipeline a hard look at what’s gumming up the works may be equally important. A paper by Dr. David Steensma (Dana-Farber, Harvard Medical School) in the Journal of Clinical Oncology caught our eye last week. The newest member of MPNclinic, Steensma is also one hell of a writer. Along with co-author, MD Anderson’s Dr. Hagop Kantarjian — remember him from the crusade to lower cancer drug prices? — Steensma makes a compelling case for streamlining the process that clogs development of new cancer drugs.(More in TSR)
Let’s get the MRF Survey done today
“If not now, when?”
You can read the current issue of the Q … right here!
How I treat MPNs? …Silver, Mesa, Hasselbalch, Harrison
Aspirin, Platelets and Thrombosis… by J.J. Michiels…
Interferon instructions for my patients… H.C. Hasselbalch
The List — 100+ Patient-Recommended Hematologists
Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNforum articles, list your Blog, or write an article. (We’ll even help you get started.)…Letter to the Editor
For information
Contact: ourMPNforum@gmail.com
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Comments on: "March, 2014" (1)
Awesome mag this month. Glad to see the article from Jeremy and Harvey. Loved the MPN Clinic. Well, hi neatly, I thought the whole edition was superb. Thanks for such great effort.