MPNforum Magazine

This New Orleans wasn’t about Bourbon Street and gumbo.

At first, it was more about a crummy hotel room and acres of convention halls filled with hematologists and posters. It was about getting some answers.   The 55th Annual Meeting of the Society of American Hematology was held at the end of an MPN month that saw a strange mix of high achievement and despicable actions.

We went to ASH to learn why Sanofi abandoned patients on its Phase III fedratinib clinical trial, placing our friends at risk. We went to learn the real promise of imetelstat. There were other stories —  The MPNforum Fatigue Project poster, 23andMe,  Promedior, Gilead’s plans for CYT 387… but those two questions were primary.

We were wrong, of course.   Our carefully laid operational plans were delayed by winter ice storms and the blazing late breaking abstracts that introduced CALR – calreticulin — into the MPN landscape like a meteor dropping out of a black sky.

And overwhelmed by the warmth, depth and meaning to it all was given by fellow MPN patients and our caregivers.  They’re both visible and invisible in this yearend/year beginning issue of MPNforum.  Kelley and Suzie Lanier — subscribers and New Orleans residents we had never before met — helped sort out transportation and New Orleans housing issues. ( Kelley also filled in as a deputy reporter for a meeting we couldn’t attend.)  Charlie Nielsen and Kathy Dubin Flynn contributed their views of Andrew Schorr’s free patient support seminar in Houston (you’ll see that report in a weeks or so after the video links are on line.)

Harvey Gould re-emerged from one of those MPN dark shadows,  dropped from Cytopia.  You wouldn’t guess it from Breakfast with Harvey but he’s facing new challenges.   We  connected with him and his family including Ashley.  (Most of us met her on-line when 23andMe made their extraordinary pitch to build an MPN database.)

Remember Mary Ann Farley, the musician/artist profiled a year or so ago? We bumped into her on the Exhibit floor at, of all places, Incyte’s Wall of Heroes where we found marketing exec Pamela Murphy, a primary force behind all the brilliant and aggressive marketing we’ve been railing against. (Yes, she warranted a big hug.)

Dr. Claire Harrison, one of our most brilliant and loyal supporters and contributors, gave us her views on ASH events even as she was recovering from the bad weather travel delays that socked the South.  Dr. Robyn Emanuel who’s quarterbacking our Fatigue Project sat still for an interview and posed in front of the Fatigue Project Poster…and Dr. Ruben Mesa whose unexpected health incident scared us all just a month or two ago was on hand.  Dr. John Mascarenhas – remember him from the MPNclinic ?  We met him at Bob Bieber’s booth. MPN University piece we published earlier this year.

We spent some time with MPN Foundation’s Robert Rosen and Barbara Van Husen.  We’ve been urging readers to make yearend donations to this amazing group that has funded every significant development in MPN research for the past decade.  That was before we discovered they provided seed money for the CALR research, the blockbuster news rocking the MPN pavilion.    Really , these are amazing people who work without pay for our community. If you have a few bucks left over this Holiday Season, remember them.

Finally, we did come away with some answers, shared in the stories of this yearend/year beginning issue… and many questions. 

Because of the short interval between experience and reporting, some technical difficulties — plus the need for several intervening naps during the creation and production process —  there are bound to be errors and imperfections in these reports. Where possible we tried to compensate by providing exhibits or links to primary materials.

Please weigh in by correcting the record with your comments and opinions.

 And now… enjoy the December 2013-January 2014 issue of MPNforum Magazine… and a  Best wishes from all of us at MPNforum for a joyous healthy, creative holiday season!