International MPN News, Science & Opinion

How to rock the boat

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This is the Autumn fund-raising season.  But before you reach for your credit card, Zhen Georgeshotplease take two or three minutes to review what we’re doing..

The new MPNforum.

Together, we have helped change the MPN landscape. And in the process MPNforum has changed radically since our beginning. The early MPNforum presented a hundred stories and faces of patients and caregivers. We created an on-line meeting place. At the time, it was badly needed.

Now a rich mixture of MPN Facebook pages, YouTube, Twitter and individual blogs have filled those needs in a more immediate way. MPN columnists and writers now speak out from their own blogs, join in interactive Facebook conversations, produce and post videos.

The new role for MPNforum, laid out in the formal mission statement last year, was to move more directly into MPN patient advocacy, translate scientific findings into high impact graphic stories, and report on news and events of interest to our community.

That’s what the Fatigue Project, the Jakafi drug pricing petition, MPNclinic, and the launch of the MPN Quarterly Journal are all about.  These direct actions take place alongside the monthly magazine, the TSR newsletter plus features like the List of Hematologists and breaking news.  (And there’s always room in the Forum for stories that need to stretch beyond the length and life of a Facebook post.)

Money

MPNforum is crowd-source financed through small donations.  That hasn’t changed.  There are no salaries, no surpluses, no grants, no corporate advertising.  We accept no donations from corporations, no gift in excess of $100 to fund basic operating expenses.  (An exception to limits is Special Supplement financing undertaken to fill specific needs beyond routine operations.) 

We have press privileges but no travel budget to cover the annual American Society of Hematology meeting,the world’s largest gathering of hematologists presenting current scientific findings. Instead of opening a Special Supplement to fund reporting on ASH, I’d like to see us include those expenses as part of our common need to investigate research into MPN therapeutic interventions.

We had intended to cover all expenses through advertising revenues associated with our new Quarterly Journal.  This past year for-profit businesses, funded by drug companies, entered the MPN media mix. After seeing the dangers of mixing commercial activity with MPN education and advocacy, we realized we could not go down that path and preserve editorial independence.

The cost of independence

MPNforum is independent.  Independence is not just about freedom from entangling financial relationships. Independence is a sometimes nasty and painful editorial requirement. It leads to unintended pain and distress. I know we have offended people we like and respect as well as others.

Rocking the boat

MPNforum has rocked the MPN boat. No apologies.  It’s a boat that often needs rocking.  We have challenged cherished projects of institutions, corporations and physicians.  In every case we provided opportunities for comment and response with and after publication. This past year…

    We published articles asking for an end to public attacks on Jakafi in consumer media by a highly respected and eminent hematologist.

    We petitioned a drug company providing a vital MF med to lower its price and openly questioned its marketing tactics..

    We challenged the wisdom of patients signing up for a new unproven Phase II drug clinical trial.

    We revealed the commercial money-making nature of three new businesses outfitted in public service clothes.

    We objected to the marginalization of patients by the largest professional association in Hematology.

And we did not do any of this quietly or discreetly. We named participants, printed photographs, and featured our stories in headlines. The driving force of this kind of watchdog journalism — backed by fact-checking and investigation –  is to help empower us as MPN patients and caregivers.  It can be effective.

But it does rock the boat.

It was never our intention to cause anyone discomfort. The purpose of every story in MPNforum is to inform and defend MPN patients.  The rest is collateral damage.

Biased reporting

I console myself that all this is in the service of objective reporting…but in fact MPNforum is biased.  Our focus is to understand and report the impact of events on us, the MPN patients and caregivers and take direct action.  We have no other agenda.

It’s that focus that makes MPNforum stand up and rock the boat.

The result of that focus is what makes the work we do together worthy.

Now, if you like, you can reach for your credit card.  Or tuck a check in the mail.

Gifts to MPNforum can range from $5 – $100.  This is the only source of MPNForum funding and our clearest input on how well we’re serving the MPN community.   So even if you’re basically  broke, please try to scrape up a minimal donation to stand with us.  But definitely don’t donate more than $100 since we’ll only have to refund the difference and PayPal takes a cut from the transaction both ways.

We’re an LLC working under a non-profit charter, not a 501 (c)(3)  non-profit corporation so your gift is not tax deductible

                       In advance, thank you,

                            Zhen for MPNforum

(Clicking on the Rock on! button  is the easiest way to contribute to MPNforum.  It will take you to the PayPal site. You can use any credit card or your PayPal account. (Funds for MPNforum are processed by Blue Mountain Schoolhouse, LLC, the MPNforum PayPal account.) And if you want to show your support for science coverage versus watchdog journalism, you can pass by the Rock on! button and press the Donate button at the bottom of the page.)

Rock on!

donate button

MPNforum . PO 17142 . Asheville, North Carolina . 28816

Comments on: "How to rock the boat" (3)

  1. Patsy Bushee said:

    Your work is appreciated! Thank you for your guidance and help.

  2. Barbara Pontecorvo said:

    Zhen, I’m so impressed with the creativity and dedication you’re showing in launching this effort -thank you! Barbara Pontecorvo

  3. Nancy Thomason said:

    Thank you for all you do to keep the public educated and to fight this family of diseases!

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