International MPN News, Science & Opinion

Planning session…

Don’t send money….

(This message contains 802 words.  Please take time to read it and respond )

Response to our Small Donation request has been encouraging and humbling.

Our thanks to all of you for your support of MPNforum Magazine.  Your contributions will help take us the next step.  In all, $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.

In our review of operations , we shared with you the creative contributions of so many in our MPN community producing articles, reviews, memoirs, opinion, humor, reflection, science, art, spirituality.  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.

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

 Our first challenge:  Will  MPN patients and caregivers, scientists and clinical investigators  contribute their stories to an on-line monthly MPN magazine? …and, after that, does this magazine serve the  MPN community’s needs?  The answer on both counts has been decisive:   Well over 300 creative contributions filled our pages which were visited  by over 57,000 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. We’ve had 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 open to all subscribers to MPNforum followed by 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, the chief being the selfish vanity of altruism, an ego-expanding syndrome that warps objectivity.  OK…,another danger is the ultimate inability to pay bills.

We don’t want to compete with those raising money to help MPN patients directly or help 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 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, likely an annual total budget of only $15,000 – $25,000,  suggests this route might be overkill.

It’s your call

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 1, either by using the public Comment box, below or through private e-mail to   ourMPNforum@gmail.com

Many thanks for your time…and good thoughts,

                                                                                                 Zhen

                                                                        

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