International MPN News, Science & Opinion

Moving ahead… Update

With the surprisingly rapid growth of MPNforum Magazine, we find ourselves in need of more hands on the wheel, more heads under the hood.

We need someone to help us archive and index our stories and articles….a communications person to help us reach out to organizations with similar patient support objectives…and, most of all, a few people ready to take on parts of the production and publishing of a web-based publication.

(See Announcements and to volunteer or register for the workshop, go here.)

Response to our first request for planning ideas and Small Donations has been encouraging and humbling.

Our thanks to all of you for your support of MPNforum Magazine.  Your thoughts on organization and financing will play a significant role in April’s planning sessions….And  your contributions will help take us the next step.  

In the first two weeks, $947 was donated in amounts from $10 to $100 (the maximum allowed) with contributions coming in from Hong Kong, Canada, Britain, Australia, South Africa  and all parts of the United States. Small donations by many of us are in the spirit of building a Forum we all can share, so this first response  is doubly heartening,

In our review of operations, we shared with you the creative contributions of so many in our MPN community. We have heard from many followers of the Forum. Thank you all for your good wishes and kind words.

As you might expect running an MPN magazine requires a lot of resources. MPforum Magazine requires the efforts not just of our contributors  but in-depth reporting and the production of the magazine:   Design and layout, photo selection,  editing, fact check, proofing and programming.  These are all time-intensive activities especially for an all volunteer group like ours generally located several time zones from each other.

We need your ideas on how to move forward to a sustainable, durable MPNforum in the future.

MPNforum Magazine fills a need for our community of patients and caregivers.  Well over 300 creative contributions filled our pages which were visited  by nearly 60,000 people.  Average issue readership is now over 9,000.   Together, we’ve gotten to this point with no financing, minimal organization, and an ad hoc editorial board.

United, we’ve made a great start.  Our future depends on (1) continued broad participation in the Forum,  (2) careful planning and (3) adequate financing.

The first is coming under control as more and more contributors learn how to produce the magazine, handle the editing and programming chores. Consider signing up for the Publishing Workshop or  an Intern program.  

We have a core editorial board – Arch, Jeremy, Harvey, Michael and Ellen that has been expanding and now includes Barbara and Manuela.  

 We will have a Planning Session in April — comment, input and review, open to all subscribers to MPNforum. Following  board review of schedules and budgets for the year, the resulting plan and budget will be published in the Forum.

The issue of money, particularly in hard times, is thorny. So far we’ve been self-financed…. or not financed.  The publishing of MPNforum is very much a fulltime job for a few people and part-time for many people.  No one has ever gotten paid or even received reimbursement for expenses incurred.

There are several dangers to uncompensated service. A monthly publication is full-time work. Under pressures of family, work, and MPN the ability to field volunteers reliably is compromised.  We need a small staff.

We don’t want to compete with those raising money to help MPN patients directly or  to fund MPN research.   We also don’t want to feel undue influence over editorial coverage due to large investment by corporations or individuals through grants or advertising.

We’ve considered three financial options:
(1) The Small Donation program   Asking for donations from $5 to a maximum of $100 on an entirely voluntary basis is the first option.  Donors invest in MPNforum in small amounts that don’t impact their needs or competing claims for funds.  Doing so gives us all a direct stake in the Forum and potentially provides required working capital by sharing the burden across our whole community,

(2) Advertising…. We anticipate  moving to a new, independent web host where we can have greater creative freedom. We can also run discreet ads,  Aside from the minor annoyance of seeing an unwanted ad, the downside to this is the added expense, the need for more sophisticated web master services and an ad sales effort.  The upside is much greater flexibility in design and web services.

(3) Grants…  Organizing as a 501 (c)(3)  non profit corporation would qualify us for funding by several organizations whose mission includes patient education.  Based on our review of operations and projected costs, this option seems least likely. It would have us compete for funds with organizations serving our community and it is the most expensive and tedious route for us to go.   Moreover,  the minimal funds we need to move ahead  suggests this route might be overkill.

What do you think?

This really is your Forum and it’s critical to hear your thinking about these options….or your wholly new ideas.   We’ve come this far together. By putting our heads together now and selecting the best path to go forward MPNforum Magazine will be a creative resource for our community on into the future.

Please respond by March 15, either by using the Comment box, below or via private e-mail to:   ourMPNforum@gmail.com

Many thanks for your time…and good thoughts,

                                             Zhen

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