International MPN News, Science & Opinion

Spring, 2017

 

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Three stories:  Someone has your back.

Our first story is about a partnership and a truly heroic struggle. It is an American story of Voncille Fryou (Peppe) and her physician fighting against enormous odds to save her life. Peppe’s story sheds light on the choices we make, the primary value of supportive relationships… and the survival mechanisms available to us in the twisted medical system in which we find ourselves .    The fixer of everything.

 

 

The second story traces the struggles and work of Robert Tollen, the founding pioneer of MPN patient support. He was a lifeline to thousands of MPN patients and seriously antagonized a few. He died last month at age 69. The loss of this giant controversial figure leaves a massive hole in our community.    The Robert you never knew

 

 

Our final story is a whodunnit, a scientific detective story about another kind of cooperation. There’s a blend of inherited and acquired events that combine to create our MPNHere’s how a Stanford researcher led the effort to convert MPN patient spit to uncover the secret molecular world that drives our MPN disease. It’s a rare look at our rare disease… and the greed that drives our lack of good new MPN meds.  The unlikely birth of an MPN.

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The MPNResearch Foundation is set to unveil myMPN, the MPN Patient Registry. The aim: Consolidate clinical and patient reported data to focus research, stimulate targeted drug R&D and support therapeutic outcomes. Here’s what it’s all about…Why it’s going to improve your survival odds and how you can get involved. 

 

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News and Notable.. HikeMFdots cml cropped Robyn’s diet and nutrition studydots cml cropped  Lacey’s storydots cml cropped   MPN Advocacy and Education 2017 coming attractionsdots cml cropped A letter from Beatrice

Robyn Scherberrobyn-in-oregon is tireless in cooking up MPN research aimed at pinpointing our symptoms and coping strategies and exploring alternative and integrative therapies.  This time she’s really in the kitchen. Listen up:  “Hello to all! We would like to invite anyone who has been diagnosed with any MPN to take this survey about nutrition. Physicians at Mayo Clinic and the University of California, Irvine are looking at nutrition as a method to make MPN patients feel better and to help control inflammation. This survey will help them to create a dietary curriculum that is tailored to your needs and preferences. The survey can be found at: https://src.co1.qualtrics.com/SE/?SID=SV_6fiTZskivSRXjrT 

For the back story on one aspect of Robyn’s work with Dr. Angela Fleischman see Barbara Kurtz’ article Diet as a frontline MPN defense and the impact of low inflammatory diet on MPN patients

dots sml  This is the third year that Julie Libon, an MF patient, is rallying friends and family to take a walk in the woods to raise research funds for MPNs.  In each of its first walks, HikeMF attracted lori-and-julie-hikemfabout 140 hikers and raised a total $70,000 to benefit the MPN Research Foundation.  This year HikeMF will be raising funds to benefit both the MPN Research Foundation and The Mullally Laboratory at Brigham and Women’s Hospital.  And you’re invited,  says Julie, shown here, right, with her sister Lori who has the good sense to wear a hat, “We will be embarking on an easy 2.9 mile hike, May 20th on an old carriage road that winds around a beautiful pond in Easton, MA.” After the hike, food and a monster raffle.   For more info, to register, donate, set up a fundraising page or do all three, check out HikeMF.org.  If you would like to organize your own hike, walk or run, Julie would be  happy to let you know how they put this all together. Just contact her at hikemf@aol.com. dots sml 

patient-spotlightLacey’s story should be required reading for anyone trying to go it alone. Starting with high platelet levels and working with doctors who weren’t familiar with ET, she ran the Anagrelide and hydroxyurea gauntlet haunted by conflicting survival myths. Finally got the help she needed, help we all need from a qualified MPN specialist.  Her story is in MPNFocus, the informative, slick newsletter Kate Newberry is publishing out of  MD Anderson.

  Brain Fog and post transplant recovery, a letter from Beatrice Larroque

dots sml In case you haven’t kept up with developments at MPN Advocacy and Education, head for their web page for an eye-openingg refresher course. mpnadvocacy-2017-eventsThe big news always is their expanded high-octane, low cost seminar events now stretching Coast-to-Coast and into Australia. Beyond events, the meat and potatoes of MPN A&E, you’ll find patient advocacy programs, informative articles and even a chance to help vets with MPNS. Check it out here.

 

From the ARCHIVES

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World Class Stem Cell Transplant Experts answer your questions about SCT.

The prospect of a stem cell transplant (SCT) is never far from an MPN patient’s mind. At first diagnosis the idea arises as a possibility to nip this disease in the bud. At the other extreme, SCT can appear to be our only option to stop myelofibrosis progression.  To answer patient questions and share their thoughts The MPN Quarterly Journal convened a distinguished panel of world class experts. From the archives,  Here’s the best from Drs.Nicolaus Kroeger (Hamburg), Richard Silver and Tsiporah Shore (Weill-Cornell), D0nal McLornan and Claire Harrison (Guy’s and St Thomas’), Ruben Mesa and Veena Fauble (Mayo Clinic),  Srdan Verstovsek (MD Anderson)  and David Steensma (Harvard/Dana Farber). Considering stem cell transplant 

Just Updated,,,,List of  251 Patient-Recommended Hematologists from 19 Nations

The MPNclinics – 302 answers to 141 Patient questions… with Index

The Catalog of MPNforum Articles. ..

Subscribe to MPNforum

  • And thanks to Sylvia Ross, Julie Libon and Jane Frantz for a ton of proofreading. (The remaining errors are entirely due to the Editor’s haste.)

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Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNforum articles, list your Blog, or write an article. (We’ll even help you get started.)…Letter to the Editor

For information Contact: ourMPNforum@gmail.com

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© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2017. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted provided full and clear credit is given to authors and MPNforum.com with appropriate and specific direction to the original content.

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Comments on: "Spring, 2017" (1)

  1. Karen Johnston said:

    Thanks so much for all the good information and articles.

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