..the MPN community's hometown paper

April 2014

forumsphere

In this issue…                                                  

Spring Fund-Raiser, Where do you stand?  Thumbs up for the Forum

CALR:  Dangerous…or Hopeful?   Scientists share story of discovery and discuss the impact of calreticulin mutation.

The CALR mutation discoveries are clearly the most significant current event to affect MPN diagnostics and future therapies.   In this issue we interview the lead scientists TOnyGreen 6of the two separate groups that published their findings – Tony Green and Robert Kralovics…TheyKralovics unlock the science and discuss some implications for us:  disease progression.. diagnostics…a vaccine against MF?   Is CALR dangerous or a promising new direction? CALR gene michalak 1995 cropped And here’smeet the cell a companion Your Introductory Guide to CALR Where it lives, what it does and why we should care.

line

Interferon — Will  common sense and medical ethics prevail over prejudice and ignorance?

“Now we have only interferon.” That was Robert Kralovics response when he learned Imetelstat was placed on clinical hold.  In Europe, for years, interferon has been a front line therapy for MPNs.  In the US we have to get interferon through the back door, off label. In An Open Letter to the US MPN CommunitytHasselbalchwo of the world’s most eminent hematologists – Richard Silver and Hans Hasselbalch – take on the criticisms leveled against the interferons by Tefferi on YouTubeAyalew Tefferi and others.   divider scross gif  The Interferon Archives — An MPN Patient Resource Interferon may not be for all of us under all circumstances but we deserve the right to get it if our doctors consider it our best option.  The Interferon Archives  is a growing collection of exhibits to help us jump the hurdles placed in the path of interferon therapy when it’s our best option.    Featuring:    Jeremy’s Rocky Road to Interferon.

The painful struggles of MPNforum friend, board member and columnist Harvey Gould… This very day he and his medical team work toHarvey skinny at bkfast crop control his surging AML to prepare him for a possible stem cell transplant. It’s a story told by Harvey himself with intelligence, insight and humor from the further reaches of the MPN Long and winding road, this issue: “Now the Real chemo begins!”

line

dots sml TSR  –  The Senyak Report dots sml

line (Click here for TSR )

  In this edition of TSR:

SF Protest, New York Times

SF Protest, New York Times

Gilead drug pricing ticks off Congress, patients and there are more than a few reasons MPN patients and caregivers have to pay attention dots sml There are positive results to report on the Zebra Coalition petition Zebra and Zebretteto the FDA to bring a Patient Advocate into every MPN clinical. Here’s the next step coming up next week dots sml And now we face the last few days to participate in the MPN-Related Fatigue Project with well over 1300 completed survey responses You can still complete the survey and help shape the coming clinical trial. (Click here to get started.) dots sml  A summary of Bulletins on the latest blips in the Geron/Imetelstat bumpy path to market– from  FDA holds and Class Action lawsuits to continued corporate efforts to get on trackdots smlNotice of community gatherings of MPN patients and doctors.dots sml The status of the MPNforum Freedom of Information Act appeal to get the FDA to finally release Sanofi data months after that Phase III JAK inhibitor trial blew up..

  It’s all here, in TSR

line Your MPNforum Magazine, independent, investigative advocacy journalism is entirely supported by the contributions of the MPN community itself.  No big corporate donations, no advertising revenues, no staff salaries. small donation (Yes, the April drive to fund advocacy projects and magazine production is on.   You can help support independent MPN reporting and Patient Advocacy by clicking on the Donate button to your right. Same rules:  Small donations only, please.  No gifts over $100.)

line

Contents

And if you missed the links to stories in this issue, here they are in one place:

CALR – an introductory guide

Interview with Tony Green

Interview with Robert Kralovics

An Open Letter to the US MPN Community

The Interferon Archives

Long Winding Road — Let the REAL chemo begin

Jeremy’s Rocky Road to Interferon

TSR Newsletter 

Thumbs up for the Forum

divider scross gif

 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 MQJ3 header line

The List – 100+ Patient-Recommended Hematologists

The First Six Combined MPNclinics with Index

The Catalog of Articles. ..

Subscribe to MPNforum

line masthead

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

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2014. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Unauthorized use and/or duplication of this material without express and written permission is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

line  

Comments on: "April 2014" (2)

  1. Thank you Zhen for another wonderful issue of MPN Forum. Your hard work, dedication and commitment to keeping the MPN community up-to-date with research developments and issues important to us is very much appreciated. I don’t know how you manage to do it month after month. Keep up the great work!

  2. I hardly know where to begin, so I will, of course. This magnificent April issue is far far more than a MPNforum monthly. It’s a up to date compendium, a syllabus,a digest and a survey about MPN,wrapped in easy to understand and enjoy reading. It’s a book of insights and hard facts, of impressions, opinions and examples of class, It reveals resistance and acceptance, hard work and results.in our struggle with the exigencies and vicissitudes of proliferating marrow cells and fibers. IOW, the april issue isn’t written by april fools. A.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,067 other followers

%d bloggers like this: