International MPN News, Science & Opinion

Can we really make a difference?

by Zhenya Senyak

Our MPN world has been rocked in the past two years. 

And it’s just beginning…

It happens so gradually you hardly notice it. 

Our MPN world has changed bit by bit until today it’s not much like it was back in 2011 when MPNforum got started.   Sure, there have been dramatic scientific and medical advances.  But the biggest change is the way we’ve come together, come to know each other, see each other.  

Now we are organized as never before to work for a cure

Today is the official opening of the MPNforum  2013 Small Donation fund-raising program.   It’s the first small step in making changes based on the research and planning sessions of the past three months. (Thank you, again, for all your input.) There’s no need for a long-winded pitch
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Instead, this is a reflection on what we’ve done together to help write the history of these past two years… and a chance for you to register your vote on where we go from here.

A path to citizenship

Like you, or someone you care for, I have a rare blood cancer, a  myeloproliferative neoplasm.  First ET and, since 2009, MF.   Eventually, to come to terms with my MF,  I started MPNforum

As we began to publish, I found myself in another world with an added human and scientific dimension.  We stepped out from behind our black and white e-mail addresses to share our stories, offer help.  Complex genetic issues were now illustrated with videos and cartoons.  It was a bit like stepping into a technicolor Land of Oz.

Having any MPN automatically makes each of us a citizen of another country, a nation inhabited by perhaps 150,000, maybe 250,000, maybe more.  No one really knows because most of us are invisible.

We have our own language —  JAK STAT pathways and venesections,  hematocrits and platelets, etc. — and often hang out with each other because few in the outside world have any idea what an MPN is.  A very few of us occasionally meet, see and touch one another. Our nation’s boundaries are defined by the Internet.  

A Cyber-Nation comes together

Three people – Harriet, Robert and Joyce    blazed a path to this Internet nation for us. I heard of them but, like most of us, did not know what they looked like or much about them. Our first face-to-face meeting took place through MPNforum.  That’s how many of us —  illustrated by photographs and stories from patients, family and friends — emerged into fuller reality for each other.

By a quirk of fate, MPNforum came into being just months before Jakafi, the first medicine to relieve the worst effects of myelofibrosis, was approved.

Suddenly we citizens of this tiny nation could draw close around our computer screens to see and hear the people who made the event possible:  drug makers and physicians, scientists, executives and patients. We could hear their voices, see their faces, draw close around our computer screens as they told us their stories and held up colorful charts for us to study. Later, as controversy and discovery erupted within our borders, we tuned into those events as well through our common MPNforum connection, exchanged views on our Facebook pages.

MPNforum has been significant in ending our isolation.  Today, while the world still barely knows us, we have come to recognize each other. 

Now, with the help of MPNforum and social media our citizens, our physicians  and leaders have familiar faces and stories…and much more than that.  We now share a vision undreamed of just two years ago:  We are no longer in the dark but openly, regularly share our hopes and fears, our knowledge and our support with a visible community. 

Open-hearted cooperation in our community has made invaluable resources available to all of us —  the MPNclinic and the List of Patient-Recommended Hematologists ,  the MPD Support, MPDchat and MPN-NET archives, MPD Voice, and the MPN Foundation’s Newsletter plus several popular MPN Facebook pages.

Typical of our little orphan nation, is MPNforum itself.

The work of uniting us, of holding up a world-wide Internet mirror so we could finally really see each other, was not done by an outside group — for there is little profit in MPNs.  The work was done by all of us, a collective of patients, caregivers  and physicians without a shadow of conventional organization.

MPNforum has no president, no board of directors, no income, pays no salaries, no honoraria…and yet we have published 22 monthly issues plus special reports  crammed with stories of people and science.  We started as a personal blog and now qualify for press credentials at international  medical meetings.  More than 250 of us collectively have contributed stories, opinion, grunt work, photos and videos.  And when we needed cash, we chipped in with small donations.

Amazingly, it all works.  The overwhelming acceptance of MPNforum tells the whole story. You and I are among 40,000+ people  who made nearly 175,000 visits to MPNforum pages.We come together to be together. And together we are a serious force to help convey knowledge and facilitate change for our whole MPN community. 

 The Fatigue Project

Our MPN Nation, tiny though it is among the family of nations, tiredstricken and burdened with a terrible illness, rises to formidable, collective effort to protect the welfare, the well-being of its citizens.  You can see it in your Patient Support e-mail lists, in posts on your Facebook pages and, most recently in The Fatigue Project The idea?   Find a cure, get relief from MPN-Related Fatigue (MRF).

Within just three weeks, 901 of us completed a survey preliminary to designing formal MRF research and a potential clinical trial.  An additional 400 of us enrolled in the Fatigue Project for on-going information and trial recruitment.

Fatigue —  for many of us with MPNs and other blood cancers – is the very worst, most debilitating symptom.  Now that we have come together in a great united state of MPN there is no need to suffer in isolation… and no stopping our drive for a cure.   Will we beat it?

 Yes we will!  It may take some time but we are already well on our way.  Timing might be unpredictable but the  outcome is certain.   We will beat blood cancer. Much has been learned in the tsunami of blood research that has spilled across scientific journals the past five years and washed up in drug company labs and on to pharmacy shelves. 

That is the central reality powering our collective decision to reorganize and expand MPNforum publications.

The rest is up to you. 

Last year’s Small Donation Program produced enough to buy supplies and keep the lights on…and a supplemental program got us to Atlanta to cover the ASH meeting in Atlanta and help replace equipment that crashed in service. Now our immediate objective is reorganization of the Forum with an expanded format, redesigned website plus support for new direct action projects to assist MPN patients and caregivers. 

On the ballot are three linked items:

(1) MPNforum Magazine will continue to produce a monthly on-line report – The MPNforum Monthly – concentrating on current news, publishing abstracts, photographs, and links to MPN articles, papers, and stories… a visual, hyper-linked Reader’s Digest of sorts for the MPN community.

(2) In addition, we will publish The MPNforum Quarterly, a journal of articles, discussion, and opinion. (A print version of the Quarterly will also be available.) Both publications will be moved to our new web site.  

(3) We need to organize, formally, to supplement our all volunteer staff with part-time and consulting help in areas such as web design, administration, and production. That will mean eventually creating sustaining funds through sponsorship.

All these changes will take place bit by bit.  After you’ve had a chance to register your opinion by voting. 

Cast your vote for your MPNforum

Now it’s in your hands in the privacy of your on-line voting booth.. This Small Donation vote is a different kind of vote, a vote of confidence, a vote to strengthen MPNforum.  (The Small Donation program is open for gifts in any amount from $5 to a maximum of $100.)

Pushing the button  is the easiest way to vote your support.  It will take you to the PayPal site. You can use any credit card or your PayPal account.

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It’s your Vote. It’s your Forum.

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Together, we are the difference. Beat MPNs.

You can also make your gift by U.S. mail.

 MPNforum’s address is MPNforum Magazine:  PO Box 17142, Asheville, North Carolina, 28816     

You can donate any amount between $5 – $100. 

 Your gift is NOT tax deductible.  And please don’t exceed that limit since it’s expensive and time-consuming  to refund amounts over $100.  You will get confirmation through the PayPal system, a thank you note from us and see the results of your gift in action over the next few months…and years.

                            Thank you…be well and keep in touch, really.

                                             Zhen

                            From all of us at MPNforum

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ourMPNforum@gmail.com

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