MPNforum Magazine

Confessions of an MPN Hero Whore

Zhenya Senyak

Once again, MPNforum was able to postpone its Small Donation Yearend program. And I got to stay at an upscale convention hotel in Orlando for a couple of nights.,

It’s all thanks to awards made to me, the ex-Whore of MPN Heroes.

In 2013, MPNforum led the charge a against Incyte having the chutzpah to select MPN Heroes after gouging MPN patients and the US medical system with a $10,000/month drug.  Their blatantly promotional stunt was commercially driven and deeply cynical.

That was the year I met Harvey Gould and his family at the New Orleans ASH meeting. He had nominated his daughter Ashley for the work she did in getting 23andMe to build an MPN database for research.

So in 2014, when I was selected as an MPN Hero myself I faced a real dilemma.  MPNforum is always strapped for cash and Heroes got their trip expenses to ASH paid.  More than that, the cash grant that came with the award could help fund research at two of our nonprofit foundations.  So last year, I slouched on up to the stage, picked up my Jakki and turned a trick for money.

It was a painful experience. Even though the meeting was in San Francisco, Harvey would not be there.  He had started his stem cell transplant right after New Orleans.  His myelofibrosis had flared into AML and despite months of ferocious struggle he succumbed.

That changed everything.  The true value of the MPN Hero program helped sustain many of us in recognition of our common struggles, our common losses and victories.

.Over the years I began to know some of the Incyte people – including Pam Murphy and Dave Dubinski —architects of the MPN Heroes program. It would be hard not to like and admire them. (I still turn to Pam for advice these days even though she left the corporate boardroom to muck out Rio Royal’s stable and mess around with her dog Goose.)

But it’s much more than that. I came to see the impact this commercial PR stunt has on the MPN community. There’s’ the enhanced spirit among  MPN physicians, patients and caregivers as people rally around selected “Heroes.”   There’s the Award money flowing into the nonprofits funding MPN research and education.  And all the Incyte marketing hoopla, the videos on shuttle buses, lobby placards, the dominating Jakafi display on the ASH Exhibit floor – have brought heightened recognition of myeloproliferative neoplasms to hematologists and post-docs swarming around ASH.

This year, an ex-hooker, I’m back,  proud to nominate some true heroes, the women and men of MPN Research Foundation, people who serve us all with passion and commitment…and astounding success.  And I was delighted to see Diane Blackstock, herself an MPN Hero, had successfully nominated Harvey Gould posthumously.

There’s not much more to say about the reception and dinner event.  Good food,  good company.

Wendy Ashmen, front person for Cure Magazine, Incyte’s partner in the MPN Heroes project,  keeps things on track with warmth and grace. It’s a classy party with some brilliant visual presentations during the awards ceremonies.  We get to know this year’s MPN Heroes in a two screen documentary before they rise to pick up their Jakki.  Their struggle is our own and witnessing this tribute renews our spirit in face of their courage and compassion.  To get the full list and many more photo you can head over to the CURE Magazine site.

Meantime, you’re welcome to pick up an hors’ d’oeuvre, have a glass of wine and circulate.  I’ll catch up with you between the trays and try to identify a few of the folks  you ran across.

Photo credits: On your left, a cheese board*, to the right something wrapped in bacon*. Top photo is   Harvey and Ashley, Goose and Rio Royal.  *Catriona Jamieson, Ruben Mesa, Nameen Pemharaju, Anne Brazeau.,BELOW: Barbara Van Husen and Robert Rosen.  *Diane Blackstock, Dave Denny, Jennifer Arnold, Kathy LaTour, *Dave Dubinski, * the new  crop of Jakkis (now blue),  *Jason Gotlib, Michelle Woerhrle, and *Raquel Nunez. (*=Photos by Jeremy Scott courtesy of CURE Magazine.)

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