International MPN News, Science & Opinion

Looking back, looking ahead

MPNforum…Our Annual Report (card)
Note home to subscribers. 

From the beginning,  we set out to cover events, places and people in our MPN world. The idea was to fuse journalism with Internet tools… and open a channel for all of us to meet each other in the light and color of a monthly Forum.

Could we help give some shape to our rapidly expanding, diverse and sometimes frightening MPN world?

 Because of rapid changes and expansion of our MPN world the best we can ever hope to do is make an honest beginning. And so many of us — at first only Jeremy, Arch, and Zhen – made that beginning in May, 2011. By year-end over 350 voices could be heard in the Forum.

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Act One:   Our very first issue established the basic nature of MPNForum as, for the first time,  we could put a face, a surname,  photographs and a  story to the voice of Karl, a voice  that came to us through the e-mail lists from his hospice bed right until his passing.

We had the honor to meet Sam and Cyndy and bathe in the brilliant designs and colors of Sam’s art, and follow their loving last days together.

Bonnie and Joe, a couple we’ve known through long struggles with MF and then mast cell lymphoma, stepped out of their black and white postings to emerge as they began,  a young couple, lovers in Bonnie’s “Love Story.”  And when Joe walked out of MD Anderson with a fresh lease on life we were there with them, thanks to Bonnie’s text and all the anonymous photographers. she charmed into ttaking pictures..

We shared clinical trials with Barbara,  stem cell transplant experience with Chris and Martytraced the history of patient support lists with in-dept interviews and painstaking research….published science stories on

fibrosis reversal, genetics, and the blood-bone niche, that helped us explore new possibilities for therapy… Dr. Claire Harrison shared her views on MPN treatment options in a far ranging interviews….we presented the 23andMe MPN DNA initiative after long interviews with scientists, company executives, the FDA…we published an earliest  and most extensive survey of Ruxolitinib from the MPN patient’s perspective, publishing interviews with Dr. Ruben Mesa and Dr. Srdan Verstovsek, principal investigators and Paul Friedman, CEO of Incyte the developer of the drug…

And then there are the opinions…Arch’s  often wry view of life and the state of medical art…Jeremy getting us up off our couches and on to our bikes, rethinking our diets and supplements, lacing up our walking shoes  ….Mike handing us tools to empower us in our relations with our doctors….Patricia, reminding us, gently, that far more than the body is involved in our struggles with MPN… and the new kid on the block, newly published author Harvey whose Long and Winding column has riveted the attention of so many of us…Add to our regular columns those  few editorials and OpEd pieces, on conferences, on the crisis in MPN patient care….

These are some major landmarks.  But the real contribution of MPNforum Magazine  has been to expand our neighborhood, through all these stories, odysseys, anecdotes and comments…Ellen Jacquart’s tale of how she was diagnosed…Sevy’s ride to raise funds to fight cancer…Harvey‘s description of his journey to the Cytopia clinical trials....  Barbara’s

You want me to do What? While you do What? With THAT???

little piece on the BMB drill that might make our lives a bit easier….Mary’s introduction of animal care into our discussions…Alan Caruthers  sharing his concerns as he enters the first phases of his SCT, and of course hundreds of comments from readers.

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 If you’re keeping score.  Since our first issue,  June, 2011…

             102                  articles and columns published…     ,

             260                 people posted comments….

      50,627               visitors came to our pages….

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            We haven’t closed our books for the year, but it’s not going to be difficult

            Revenues from all sources = $0. 00   

Direct out of pocket expenses  for stuff like supplies, travel, and equipment = < $1000,. 

All work on MPNforum Magazine,  planning, writing, design,  programming, production and promotion has been done on a volunteer basis. WordPress has supplied the platform and hosting services at no charge.

Act Two…here’s where you come in.

Going forward we plan to expand direct participation in ownership of MPNforum, in  producing and publishing the magazine…launch Myelo United, our international direct action MPN patient union initiative…begin on-line teleconferencing…introduce new editorial features now in development.

So….in 2012, are you looking for meaningful work?           

            Join management and staff of MPNforum Magazine and take a hand in making MPN history while improving the odds against us.

    Just tell us what you want to do:  ourMPNforum@gmail.com 
                                         and roll up your sleeves… we really do need you

Take me back to the Contents

© Zhenya Senyak and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Zhenya Senyak and MPNforum.com with appropriate and specific direction to the original content.

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