International MPN News, Science & Opinion

End of an era…A last chance

I will miss MPNforum…but you don’t have to.” 

Last month, to subscribers and the Forum Facebook page I posted a notice;  “Health issues and compelling commitments require me to step down as editor/publisher of MPNforum after the Winter Issue, 2017.” Health issues are nothing new for any of us here. I want to talk about the compelling commitments. And the structural changes that bring about our transformation,

A powerful Transition Team  —  all with deep, pressing commitments of their own to support the MPN community — stepped up to coordinate new editorial directions and support volunteers. Many thanks to Michelle Woerhle (MPN Research Foundation),  Ann Brazeau (MPN Advocacy and Education), Jeremy Smith (MPNforum), David Denny (Facebook: Myelofibrosis Support), and Marina Sampenes Peed (Writer, SCT survivor).

Marina launched a limited survey to assess readers’ preferences for  the future  MPNforum direction.

The results are compelling.  MPNforum is well received with strong endorsement of scientific and news coverage. But what emerged was confirmation of a new reality,  a less participatory readership. It’s a dangerous trend.

The results of Marina’s survey speak directly to the need we have as patients to become aware of how the Internet, while providing a limitless, free treasure of information, is lulling us asleep.  Too many of us are becoming consumers of data, couch potatoes in front of our computer monitors, growing intellectually and creatively lazy, dependent on others to feed us information.

With so much corporate money being poured into drug development and marketing, with so many failed clinical trials of drugs and overblown claims of efficacy, we can’t afford simply to rely on Google to make us effective partners with our hematologists. 

Of the approximately 3000 patients who received the post, 158 responded.  And although a direct request was made for volunteers only a dozen people responded, virtually all declining.  Without a volunteer staff, the early MPNforum model for investigative and confrontational journalism can’t endure. The MPNforum staff that could start a movement, contribute to more than a dozen scientific papers, share personal stories and rip apart the failed oversight of major drug companies is totally dependent on volunteers. No one gets paid.

It’s about time.

For MPN patients and caregivers, times have changed, radically, since 2011. Today there are over a dozen MPN Facebook pages serving >10,000  of us. There’s Twitter and Snapshot. There are lively informative newsletters and videos published by commercial organizations, medical institutions, nonprofits  and the Foundation.   The content is often excellent

MPNforum has always been a a volunteer patient/caregiver cooperative project.  We started in April 2011 when there was a critical need for a way for us to see one another, put a face with a name we saw on email lists, tell our stories, exchange views. We started with seven columnists and patient supplied stories. At the time no other medium serving our MPN community  supplied graphic, extended coverage of MPN life from the patient/caregiver perspective.  But where once we were a forum of MPN voices, the Forum slowly changed into a more personal blog  as technology opened new avenues for connection and platforms for personal expression.

And my own interest has grown increasingly focused on the coming end of MPNs through work in the exploding environment of gene therapy, molecular research, and precision medicine.

Yes, I will miss MPNforum.  I had a fully engaging time, I met, celebrated. and grieved with sweet, suffering, brave, funny and spectacularly wonderful people. I got to work with brilliant scientists and compassionate, generous physicians and friends. I will truly miss MPNforum.   

We will keep the back issues of MPNforum on line, at the same address, so the full catalog of articles, the MPNclinics and List of Hematologist will continue to be freely available on an open source basis.

For me, the next generation publication in the works won’t be quite the same but it will fit our community’s needs and my own passions. It’s the MPNforum of Science and Medicine, an on-line magazine of sporadic reports from the world’s MPN scientists, researchers,  labs, conferences, journals, and clinical trials.

Stay tuned, keep in touch…and if you can, chip in a few bucks to help send us to ASH one last time.. 

 Last chance to chip in

. Each year we run the Small Donation Program to raise about $4200 for our annual budget, most of which is for conferences and travel.  This year all we need to raise is $1500 to cover the ASH meeting in Atlanta, publish the Winter Issue,  and pay fees and overhead to maintain the MPNforum archives for the year 2018. 

This year’s ASH meeting, following the first cases of successful gene therapy for leukemia, is of  special interest for all of us.  News comes from ASH.We brought the first MPN notice of CRISPR gene therapy back from ASH, reported on the discovery of CALR mutation and the blow up of Sanofi’s Fedratinib trial, the failings of Momelotiib Imetelstat and PRM-151 all from ASH interviews.

As in the past, any donation up to $100. is welcome.  All gifts over that amount will be returned (and cost us a couple of bucks so please, don’t).   We will publish donor names unless you specify anonymity since donors are sponsoring this coverage for the whole community.  

And, thank you.

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MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

 

 

 

 

 

 

 

 

 

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