Hi, there…  It’s June 15th which means the monthly MPNforum will be normally delivered to your computer. Since it’s also Friday, and we don’t normally publish on the weekend,  your advance copy can be found here:

  http://mpnforum.com/june-2013-monthly-forum/

The good news about patent limitations on Genetic testing came out of Washington yesterday, so there’s a bit of a blurb on that as well but our focus this month is on the key MPN developments reported in ASCO (Chicago) and EHA (Stockholm) in the past two weeks.   Other good news: Looks like a JAK inhibitor has actually reversed fibrosis while managing MF symptoms.  With photos to prove it.

As usual with these advance copies to Subscribers.. PLEASE let me know if you find any errors, typographical or otherwise. I had the help of Janice Creed, Mary O’Leary and Nancy Carter (thank you!)  who proofed copy but changes continued to be made right up to press time and I can’t be sure I picked up all the typos they did catch.  (Please send corrections to: zhenyasenyak@gmail.com) And Ellen Jacquart tucked in a few more recommended hematologists.

Be well,  Enjoy…and have a wonderful weekend,

Zhen

 Hi, there… it finally feels like summer is a real possibility.  With everything bursting into bloom and coming into leaf, my head is locked into its own Springtime sneezing and stuffed sinus celebration… so make sure you wash your hands carefully after reading this post. (Sing Happy Birthday two times is the rule, right?)

Here’s the advance May MPNforum.  http://mpnforum.com/may-monthly/

This monthly newsletter version of MPNforum has two new features…excerpts from MPN Blogs and the Senyak Report Newsletter. In addition to the usual appeal for your input on typos and errors – even more necessary this time around as pollen season has impaired both vision and reason and the season has grounded our usual crew  – please let me know what you think.  (zhenyasenyak@gmail.com).

The front page will switch when MPNforum goes public tomorrow afternoon. I’ll be tracking down typos etc. between now and then so there’s still a little time for us to get things in order.

Many thanks…

Zhen

DO YOU BLOG?  WordPress, Blogger, Tumblr.. whatever.

Some of the very best writing and photographs — the most descriptive and honest treatment of impacts MPNs have on our lives — is in the Blogosphere. MPNforum wants to help make those stories available to the MPN community by publishing a brief description and a link to your blog.

Some bloggers want to remain relatively private and MPNforum – with an estimated 51,000 readers worldwide and over 183,000 page visits is definitely public.   If you’re willing to share your work, please send an e-mail to me (zhenyasenyak@gmail.com) or ourMPNforum@gmail.com with a link to your Blog. And let us help get the word out.

Thanks,

Zhen

Good morning… Your advance copy of the April 15 MPNforum is available here.

Until the regular edition is published Monday evening, you can access every article. (The Return to
 Contents link at the end of each article will only return you to the March Forum for now.)

It was proofed and checked but if you run across any typos or links that don’t work, please do let me know.

  Your comments, at the end of each article, are always most welcome!

     Be well, keep in touch,

         Zhen

Two Successful Drugs on Trial…

 There are two important clinical trials now recruiting – one in Europe, one across the United States – testing the combination of Jakafi with an HDAC inhibitor, Panobinostat.  On its own, this drug has recorded a Complete Response – reversal of fibrosis and restoration of hematopoietic function  — in an MF patient.  Expectations are high for its coupling with Jakafi. The story <<The Silent Gene>> is in the new MPNforum

There’s another clinical trial scheduled for late this summer of a completely different drug, PRM -151, that has been successful in reversing fibrosis. That story – along with Dr. Robyn Emmanuel’s update on patient interventions from the Fatigue Project — is also in the April 15 MPNforum, published tomorrow.

Enjoy…and if you happen to find any typos, we’re still pre-publication so please do let me know (zhenyasenyak@gmail.,com).

Zhen

We are so close…

By now, many of you have already cast your votes in the opening week of the 2013 Small Donation Program bringing us much closer to our goal.  Thank you, again.

And if you missed voting during the magic of the Passover/ Easter/ Spring break — and are just getting back into the swing of things – here’s the short version:

Simply, MPNforum Magazine has out-grown its home-made roots.  It’s no longer possible to produce a full monthly on-line magazine without some part-time or consulting help. The full story is on line at http://mpnforum.com/difference/

We are launching the MPNforum Quarterly, a journal of features and science available on-line and in print, June 15.   For now, until we can staff up, we can continue MPNforum as a graphic newsletter and still maintain projects like MPNclinic, the Fatigue Project, and the List of Hematologists.

We’re asking for your vote of confidence.  Vote to support MPNforum with your credit card or checkbook. Your small donation – any amount from $5 to a maximum of $100 –  can help build a bridge that will be there for MPN patients and caregivers for years to come.  Together, we have already made a difference.

Together, we are the difference.

It’s your Vote. It’s your Forum.

Together, we are the difference. Beat MPNs.

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

MPNforum Magazine: PO Box 17142, Asheville, North Carolina, 28816

Filed under: Uncategorized ]]> http://mpnforum.com/2013/04/01/13106/feed/ 0 zhenyasenyak forumsphere-mod-2 VOTE BUTTON donate button http://mpnforum.com/2013/03/26/a-vote-of-confidence/ http://mpnforum.com/2013/03/26/a-vote-of-confidence/#comments Tue, 26 Mar 2013 17:02:17 +0000 Zhen http://mpnforum.com/?p=12956 ]]> It’s your Vote. It’s your Forum.

Together, we are the difference. Beat MPNs.

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

MPNforum Magazine: PO Box 17142, Asheville, North Carolina, 28816

Good morning… Our 2013 Small Donation Program launches this morning in MPNforum Magazine.   Here’s your advance copy…

      Cheers,  

     Zhen

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. 

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, stricken 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. (Funds for MPNforum are processed by Blue Mountain Schoolhouse, LLC, the MPNforum PayPal account.)

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

ourMPNforum@gmail.com

Take me back to the Contents

Good morning… An advance copy of the March 15 MPNforum Magazine is now available to subscribers.  You can reach it here:

http://mpnforum.com/springtime/

(All stories can be accessed from that page but you will NOT be able to use the Return to Contents link at the end of each story until tomorrow. It’s a technicality having to do with establishing a single home page.)

As in the past, PLEASE let me know if you find any serious – or annoying – errors, and feel free to add your comments to the box at the end of each story. (zhenyasenyak@gmail.com)

Enjoy..it’s a full and historic issue,

Zhen

z

Hi, There…

This Friday, MPNforum Magazine celebrates its two year old birthday… with a report on the Fatigue Project and MPN Patient Survey results…a new MPNclinic answering questions on erythromelalgia, headache, transfusion dependence and more…  An advance issue will be available to Subscribers tomorrow.

This March 15 issue also includes the three part article, The Interferon Papers,  tracing the history, development and current use of the interferons in MPN therapy.  You can see Part I, the Discovery of interferon, now, right here.

The following is a page to appear in the MPNforum Magazine on Friday.  We’ve talked about the on-going planning sessions.  I wanted you to see the announcement of our first major change in format… and the kind of abstracts and links we plan to publish in the new MPNforum  Monthly.

If you have any questions or reactions to the changes, I’d love to hear from you…either through the public Comments box at the bottom of this post or private e-mail to me, zhenyasenyak@gmail.com

Cheers,

Zhen

With this issue, MPNforum Magazine completes two years and is moving on.

It’s time for a change

And you can lend a hand.

Over the past two years – with the pooled creative resources of the MPN community -- we have reported, advocated, educated exposed, investigated, fulminated, translated, and sometimes even entertained through a monthly blizzard of articles, photos, columns, videos, features, cartoons and news coverage.

Now that there are many thousands of fellow patients on board with the Forum and we’re supporting a couple of on-going serious projects — the exploration of means to relieve MPN-related Fatigue through the Fatigue Project and the awesome MPNclinic staffed by the world’s top MPN specialists…plus those established resources folks count on like the List of Patient- Recommended Hematologists, and the Catalog of Abstracts covering hundreds of people, articles, profiles and science– we have to get serious….for a change.

MPNforum with its freebooting attitude – surviving solely on volunteer work, creative contributions and small donations – has an obligation to change in order to survive.

There are better ways to fulfill our mission to provide the international MPN community with an active, colorful, accurate outlet for opinion, news, science, stories.

MPNforum will become two publications: The MPNforum Monthly and the MPNforum Quarterly.

The Quarterly, debuting June 21, will be more like a journal with longer, in-depth treatment of science, procedures, medicine, stories. It will be available in both on-line and print formats.

The Monthly will be a bit like its mother, MPNforum Magazine, but focused on exposing the wide array of materials published on MPNs worldwide each month Instead of three or four feature stories monthly we’re aiming a rich offering of photos and abstracts with links to articles, blogs stories, posts, poems, lists, social media, scientific publications and flat out news. The questionnaire will help us zero in on what you’re looking for in MPN coverage.

Here’s Genny’s Hope Foundation, a live example of a story we would link to in the new MPNforum Monthly…and a worthwhile place to visit in any case:

Genny’s Hope Foundation

Genny’s Hope Foundation sponsors a website designed originally by Ann Haehn in support of her daughter, Genny, facing a stem cell transplant to address her myeloid disorders. The site has become a go-to place for information, stories and encouragement for SCT patients, caregivers and donors. The current page features the story of Kathy who failed one SCT and is now readying herself for another.

https://www.facebook.com/GennysHopeFoundation

Filed under: Uncategorized ]]> http://mpnforum.com/2013/03/13/the-interferon-papersadvance-look-at-fridays-mpnforumchanges/feed/ 0 zhenyasenyak forumsphere baby-diaper-change divider horizon line genny's hope foundation Kathy divider horizon line