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 of the two separate groups that published their findings – Tony Green and Robert Kralovics…They unlock the science and discuss some implications for us: disease progression.. diagnostics…a vaccine against MF? Is CALR dangerous or a promising new direction? And here’s a companion Your Introductory Guide to CALR –Where it lives, what it does and why we should care.
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 Community… two of the world’s most eminent hematologists – Richard Silver and Hans Hasselbalch – take on the criticisms leveled against the interferons by Ayalew Tefferi and others. 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 to 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!”
In this edition of TSR:
Gilead drug pricing ticks off Congress, patients and there are more than a few reasons MPN patients and caregivers have to pay attention There are positive results to report on the Zebra Coalition petition to the FDA to bring a Patient Advocate into every MPN clinical. Here’s the next step coming up next week 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.) 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 trackNotice of community gatherings of MPN patients and doctors. 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..
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. (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.)
And if you missed the links to stories in this issue, here they are in one place:
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
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
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