MPNforum Magazine

Zhenya Senyak

The MPN Research Archives — a public resource for patients, caregivers, researchers and physicians — has moved closer to realization with support from the MPN community and a generous grant from the MPN Research Foundation. Thanks to initial funding archival sites will be maintained over the long-term.

Current holdings in the Archive include

(1) All issues of MPNforum Magazine consisting of more than 1000 articles, investigative reports, interviews, clinical findings, profiles and columns published since 2011.

MPNforum,  was the first and only fact-based, investigative medium in the MPN field. Launched in 2011, this on-line magazine grew out of the chat rooms and email patient support groups that came together in the waiting room of Dr. Harriet Gibert, in the email groups of Robert Tollen and Joyce Niblack m and the work of Robert Rosen and Barbara Van Husen..

Funded  by MPN community small donations, MPNforum has been staffed and created entirely by unpaid, volunteer writers, artists, production people, patients, caregivers and physicians.  A strong working relationship with the MPN Research Foundation supported joint projects when appropriate.

Spreading sunshine

“Sunshine is the best disinfectant” wrote Supreme Court Justice Louis Brandeis.

As part of its media mission, MPNForum has been a ray of light, . undertaking investigation of abuses by entities sowing misrepresentation, corruption and mismangement of advertising messages and  clinical trials.   Those published stories, along with   opinion columns by a host of writers, clinical reports, personality profiles and even a syndicated MPN cartoon are all in the Archives.

(2) The full publication of all MPN Quarterly Journal scientific papers; These include peer reviewed perspective  changing scientific papers by MPN specialist physicians including Nicolaus Kroeger, Ross Levine, Jan-Jacques Michiels,  Richard Silver, Ruben Mesa, John Mascarenhas, and Hans Hasselbalch along with summary articles on germline research, CRISPR, and new therapies. ..

(3) The MAGIC patient-oriented MPN risk evaluation site.  This toolbox of standard and unique evaluation instruments includes MPN symptom assessmemt, the graphic stem cell transplant timing tool and a comprehensive listing and ranking of common MPN mutations along with links to source documents.

It is anticipated that once an MPN Research Archive website is esablished and a Board of Advisors empaneled these holdings will be curated, expanded and updated.

Elements of the Archive will continue to be maintained on their original websites: http://www.mpnforum.com, http://www.MPN-MAGIC.com, and http://www.mpnjournal.org.

The MPN Archive includes participation from a worldwide consortium of reknowned MPN specialists, molecular biologists,  genetic researcherss, stem cell transplant specialists and MPN patient advocates.

You can help create this legacy.  Preserve a critical resource for this and future generations of MPN patients.

We are building a long-term home for invaluable historic and scientific reporting.  This central access site will aid  research,   giving patient and physicians a convenient, fast and reliable access to a generation of historic scientific reporting.

Questions,  comments or requests to get involved, please respond below, or drop us a line at ourmpnforum@gmail.com.  Thanks… and keep in touch.

  Zhen

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