Science & Medicine

Coming of age

A report from the MPNforum Council Meeting

In a way this first year was easy. All we had to do was create a magazine we, as MPN patients, wanted to read.

And it has been fun.  We always had lots of company. From the very beginning we aways had friends from the MPN community piling in to contribute stories and advice. And we had an Editorial Board exchanging e-mails and occasionally  meeting in a Facebook chatroom.

 The Editorial Board evolved and became more of a Town Council.  Most of our discussions concerned growing pains,  handling the increased workload, considering ways to get the work done and finance operations.  Here’s the 2012 Editorial Board….or the Council.

Who pays the bills?

In the beginning, it wasn’t an issue at all.  We opened and ran on a shoestring, for capital we didn’t need much more than  coffee cans filled with coins and maybe a couple of hundred dollars in credit card charges.

The work grew more intensive, more time-consuming.  Investigative journalism requires interviews, many calls and e-mails,  fact checking, rewrite.  Volunteer editors worked with MPN patients who were often unfamiliar with writing for publication.  Photos needed resizing, retouching and layout and production requirements expanded.  The pace picked up.

 With each issue MPNforum Magazine expanded from a home grown blog to an international publication, with over 80,000 visitors to its pages– the only monthly magazine in the world devoted entirely to the patient perspective on myeloproliferative neoplasms.

Most of our first  year, we could still chug along on spare change since our only real out of pocket expenses were supplies, gas and periodic replacement of blown computer components.  The office was a home studio, so rent, utilities, phone, transportation and internet were all part of the free package.  Nobody got paid so there was no payroll to meet.

But two things happened to change these happy circumstances.

While expenses never became excessive, they didn’t exactly stop either. And from the beginning, personal income quickly ground to a complete halt as the demands of the magazine eclipsed other projects.

Add to that growing pinch, came the impact of another reality.  We are a village of patients and caregivers, often ill or in treatment, beset by responsibilities, and suffering chronic fatigue. Most of us are unlikely to be able to commit to a set time and schedule each month.

We have dozens of good people volunteering to help produce MPNforum Magazine but few able to say I’ll work through the night to get these stories to press.  In short, we need to hire some minimal staff people to back up volunteers and cover our needs for time-dependent, hands-on work.  How are we going to pay for that?   Or the natural additions to our magazine — video, audio, pod-casting, redesign,

The Small Donation Program

From the beginning we declined to apply for grants and compete with those raising funds to further MPN research, research we all counted on to provide relief from symptoms and, ultimately, a cure.

The normal route for not for profit organizations is to  secure a large grant or two to anchor funding and then fill in the balance with small donations from those who use the organizations services,  As an independent patient-centered MPN magazine, we can’t  be dominated by big contributing  players.

 We needed a two prong plan.  A short term first phase where we would rely on the Small Donation program as we geared up for the second sustaining operational model,  

To work, the Small Donation program — donations from $10 to a maximum of  $100 to MPNforum —  requires support from many readers and subscribers.  There’s no direct payback to the Donor…no tax deduction, no special privilege, no T-shirt.  It’s just people from our international MPN community chipping in, if they can.

Our first go-around three months ago worked to solve our immediate needs to replenish supplies and pay bills, raising $1239. With so many of us limited in our ability to work, facing high medical bills and travel expenses, it’s unrealistic to expect large inflows of cash from the Small Donation Program.  But participation is a core part of the cooperative nature of MPNforum and, if it works, c the transition to a sustainable organization will be much smoother.


The sustaining model , or Phase Two, depends on revenues from advertising.  The Council spent considerable time discussing whether or not MPNforum should accept advertising.  In the end, the Council unanimously approved the concept of a carefully screened  space advertising program.

The advantages are many.  Advertising can  bring useful announcements to the attention of MPN readers. Through many small ads, no single advertiser could dominate or be appear to influence editorial decisions.  The entire burden of financing the magazine would be lifted from the few currently paying the bills and from the MPN patient population to the corporate pool of those providng products and sevices to our MPN community.

We anticipate it will take us four to six months to implement the program.

Fundamentally, the hard part for us isn’t about money.  Together, we can continue to produce MPNforum Magazine with very little capital.  Volunteer writers and editors are at the heart of the Forum.  And  it’s a mission we’re all committed to, by necessity and by choice.   Having achieved lift-off, the hard part now  is to organize, to evolve to a planned effective magazine that is sustainable.  For that we need subscribers to participate in management decisions, contribute ideas and articles to  the magazine.   For the rest, those who can make small donations to finance basic operations, will. 

All of us involved in MPNforum wil do what’s necessary to support and improve the magazine that brings technology, science and our personal stories out of darkness, into the light of the world.  The job’s just a whole lot easier and more effective with sufficient funds and greater community involvement.

  Your comments are not only welcome they’re needed!

Think Small

Donations for MPNforum can be made securely through Paypal, credit card or Mail,

MPNforum, PO Box 17142, Asheville. NC 28816.

Keep your heart wide open,

but please keep your donations small.  Donations from $5 – $100 (maxium).

Take me back to the Contents

©, 2012. Unauthorized use and/or duplication of this material without express and written permission the author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.

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