Science & Medicine

Jeremy’s Story

What A Long Strange Trip It’s Been

When Zhenya approached Arch and me about joining him in starting a new MPN magazine called MPN Forum, I agreed immediately to join without hesitation. June 15th 2011 was our first issue. The list owners of other MPN Sites were not happy about our little venture. They looked at us as a competitive threat to their existing MPN Site and some blocked us from posting our first issue on their MPN List.

(Ed. Note: Photo is of Jeremy and Zuzu. Jeremy is the one on the right.)

All we were trying to do was get factual information and stories out to MPN Patients, but many feared we would be take their members with us. We were doing all of this out of our own pockets and thinking we would be a threat was rather silly, but that was often the small mind thinking of list owners back then.

Below is the very first document I received from Zhenya outlining the type of content we might cover at MPN Forum.

MPN Forum

  • An on-line patient-centered weekly journal
  • By-lined scientific, philosophic, humorous and analytical
  • articles by MPN patients and caregivers
  • Zhenya’s list of hematologists, oncologists, and medical facilities
  • with patient reviews
  • Columns
  • Interviews
  • Letters
  • Summary of week’s MPN news
  • Research and clinical findings
  • News from the MPN Patient Support Groups
  • Calendar
  • On-line subscriber Conference
  • By (free) subscription only
  • Coming September

MPN Forum has been a long strange trip and along the way we managed to piss off some of the people who are on the medical side of the street. No one had challenged these people before until Zhenya came along and many of them did not like it. When I wrote an article raising privacy questions about 23 and Me and their connections to Google I also disclosed Stanford Dr. Jason Gottlieb’s connection to 23 and Me. How it not been disclosed publicly and he was very angry with me and refused to speak with me ever again. When Dr. Schrier passed away instead of Dr. Gottlieb seeing me he refused to take me on as a patient. But to this day I never regretted writing the article because he should have disclosed his relations and the fact I raised it pissed him off.

In nature and always factual. Much of it was exhausting work and difficult to write.  There was no other source in our industry who took on the pharmaceutical industry and we did so by exposing the truth on behalf of every MPN Patient in the World.  MPN Forum took us behind the scenes and places and topics no one else touched.  But the most important thing MPN Forum did was to bring us together as a community.

Zhenya has been the heart and soul of MPN Forum and the MPN Community for more than twenty years.  For me, Zhenya has been a great friend and I love having him in my life. He has been a brother and mentor to me and I will always love him. His contribution to the MPN Community and MPN Patients places him in a place all by himself. I will miss MPN Forum but will always be grateful for its incredible contribution to all the MPN Patients around the World.  There were so many people who helped make MPN Forum so special. And for those that never got to know Arch, he was a beautiful man with a huge heart, who entertained us all with his wisdom and magical words.  The heart and soul of MPN Forum is without a doubt Zhenya.

The writing Zhenya did was often very technical but it was educational and revealing.  MPN Forum was the only source that shined a light on what goes on behind the scenes and showed us all sides of the issues

© MPNforum, LLC ,, and the MPNforum Quarterly Journal 2020. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted provided full and clear credit is given to authors and with appropriate and specific direction to the original content.

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