International MPN News, Science & Opinion

A rare blessing…

 

 

 

 

The October 15 issue is taking shape. Before deadline pressure builds up, I wanted to bring you advance word  on things.

This coming issue is extraordinary. It carries a record number of stories, stories from around the world…  and the direct testimony of 22 early users of Jakafi, sharing their firsthand experience.  Along with their stories, many writers send along notes saying, “I hope this helps.”

 The October 15 MPNforum carries the MPNclinic supplement, this one containing nearly 100 answers to 35 patient questions.  These are the expert opinions of seven  of the world’s most highly regarded MPN specialists. Their selfless sharing of knowledge, of caring, is something we’ve come to rely on in our MPN community.

Our MPNs may be a rare disease but with it comes the blessing of a  rare and caring community.

In reality, we worry about each other. We reach out to each other. And those in our community who are caregivers and healthcare providers share in that honest concern for our well-being, wince at our pain, and rejoice in our recoveries.

Moving ahead into next year, MPNforum Magazine faces extraordinary opportunities and challenges – needs for equipment, software. programming, editors and volunteers.  (We’ll send a note along on that in a day or two.)  We want to expand MPNclinic, support fund-raising activities devoted to MPN research,and extend direct patient outreach and upgrade the magazine.  Together,we can do it,

Finally, those who share their stories in our pages welcome your responses… so do consider sending along a comment when something moves you.

Hope your Fall is off to a rollicking start,

Zhen

Comments on: "A rare blessing…" (5)

  1. Richard T. Silver, MD said:

    Hi Zhen,. I’m at the MPN meeting in Vienna taking a few days off in Salzbutg ryIwill send you some comments on my return on Monday,best regards Dick

    Sent from my iPhone

  2. As a relatively new user of Jakafi for ET I am eager to read this issue. So far, Jakafi has been very good for me.

  3. Patti Cooper said:

    On a day where I feel particularly
    “un-blessed”, your email gave me something to look forward to and brought a little hope to my day. Thank you.

  4. Jeremy has an article coming up on HU and INF. We wanted to collect these Jakafi stories sincethey represent collective experience that hasn’t been available to us
    before. Jakafi was only approved 10 months ago and came into limited clinical use in the past few months. Hydroxyurea and the interferons have a long history and I imagine most of us have taken one or the other at some point. Still, if you’d like to pull together a survey and article, we’d love to help get it out.

  5. Wow! Am looking forward to the next issue. The following issues could you have patients write in on their experiences with Peg, then Inf. and HU?

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