International MPN News, Science & Opinion

This is a war we can win!

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This is a war we can win.

Those of us enlisted – or drafted – into the small MPN army share an often desperate struggle to survive, to prevent advances by a deeply hidden enemy. We have allies, campaign strategies, skirmishes, medical centers, war profiteers, fallen warriors.

We have medics going to the aid of fallen warriors, medics-helmetwe have commanders, propagandists, victories and defeats. International scientific labs create our arsenal of chemical and biological weapons systems. We have heroes, wounded survivors,  veterans and new recruits.

We have one combat journal, MPNforum, an all- volunteer magazine reporting from the front lines.

We can win this war. Keep informed. The 2016 Small Donation Program is coming to an end. Give today to support MPNforum, Donations from $5 to a maximum of $100.

https://mpnforum.com/freee-and-independent/

And thank you.

Comments on: "This is a war we can win!" (5)

  1. Karen Ulshafer said:

    I have been following the forum for years. It is like a friend: medical advice, studies, trials, and “dear Abby” subscription for me. The information is so valuable.
    Thank you, Thank you.

  2. Rosemary Matossian said:

    Thank you & the Board for all the work you do.

  3. Pat Hensley said:

    I agree. Why have a limit on giving?

  4. David Beal said:

    Hi Zhen I sent something a week or so back, but I can help you more, and would be happy to do so, if you raise your limit a bit? Thanks, David David Beal david13@cox.net

    >

    • Thank you David and Pat. Acknowledgements of donations have been a little delayed due to a disabling sciatica episode but I think we’re caught up. On behalf of all of us at MPNforum, I deeply appreciate your generosity. The issue of limits has been fiercely debated at editorial and board meetings but it’s the rock on which MPNforum was built — and might crash as well.

      We organized as a cooperative patient enterprise to investigate and share scientific, medical and social events… to help understand our treatment options, share resources and push back the boundaries that separate us from each other, and our physicians. That may sound fancy, but it’s true…and back in April, 2011 it was essential. By sharing the work — and nearly 500 of us have participated in MPNforum so far — and the costs of mounting our programs we grew into a close community. Together, we mourned our losses and celebrated our triumphs, met our physicians, explored research findings, petitioned and no one, no drug company, government agency, advertiser, individual or non profit funded us or had any undue influence over editorial coverage. That has been our strength. Returning donations in excess of $100 signals us all that MPNforum is committed to collective, cooperative action and patient ownership.

      We continue to post appeals now more to permit wider participation than to raise funds. We do need money to cover ASH expenses for two editors and basic operations. That’s estimated at $4200 and we’re almost there.

      Because of the voluntary nature of MPNforum we need so little capital that is hasn’t been a real struggle to stay afloat. The issue for me, personally, right now is not raising the additional few hundred dollars we need but understanding the lack of participation by so many.

      With roughly 12,000 readers monthly and well over half a million visits to our pages, to see only 100 of us chip in a few dollars to the 2016 Small Donation Program suggests our model may have played out its relevance. Several people have offered to contribute substantial funds to MPNforum, but except for one bequest from a founding MPNforum writer, we have not felt the need to accept other funds or divert money that would be better spent for our community through donation to the MPN Research Foundation or CRT.

      We do MPNforum together. Some of us full time, most of us part-time. Right now you and 98 others are carrying the whole financial burden for all of us. My hope is over the next week or two you will be joined by another hundred patients and caregivers in our community.

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