International MPN News, Science & Opinion

August, 2015

forumsphere stretched August, 2015

PJ MUTANT POWERS

An ET Pajama Party.

 Jill Kaplan has ET. And two daughters.  So does Terri LibensonTerri cropped resized In fact they have so much in common you could be forgiven for thinking Terri, the creator of the popular comic strip Pajama Diaries is Jill, her creation. In an extended interview Jill …I mean, Terri… set us straight. (Head for the pajama party here.)

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CREATE — The Long and Winding Road out of MPN.

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Thanks to Harvey’s Gift and the MPN Research Foundation, a giant step forward will be taken to revolutionize stem cell transplant this Autumn. The CREATE seminar — CRISPR/Cas9 Edited Autologous Transfusion Exploration  — work has already begun. Think of a world where there’s no long wait for a stem cell donor, no Graft Versus Host Disease and no long-term reliance on immune suppressive drugs and antibiotics. A world where our own blood repaired of mutation is used for transfusion. We’re not there yet but the end is in sight.   (The Road starts here.)

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CHZ868: A new perspective from outer space… and biospace. 

The Ross Levine Lab continues to unravel the secrets of  JAK2. With Novartis they may have hit the jackpot. The next generation JAK inhibitor. 

Pluto

Behold, Pluto, lonely ice planet on the cusp of the Cosmos.  Last stop in our solar system.  This view and a glimpse of the deep Eternity beyond is an historic scientific and engineering  collaboration.  The nine year journey of the New Horizons space probe  reshaped our vision of reality.

Another nine year collaborative scientific journey approached its destination last year. It promises to reshape a more immediate vision of our reality.  

That voyage probed dark and unknown events deep within the cell’s nucleus.  Nine years after publication of his seminal paper on the JAK2 mutation in Cancer Cell —  Dr. Ross Levine and his associates at Novartis reported on a close sighting of  a molecular process, a sighting built on the work of MPN scientists over the past decade. The result will change our thinking about MPN treatment.  (More on CHZ868 here)

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Tuesday, July 28:  37 new doctors to be added to the List of Patient-Recommended Hematologists

Do you know a good hematologist?  We can suggest 211.

MPNs are so rare that few doctors — even hematologists — have treated MPN patients.  And not all who treat us are capable of accurate diagnosis or understand our therapeutic options.  Every Facebook page,  support group and MPN non-profit stresses the importance of working with an MPN specialist.

Ellen Jacquart Keep of the List

Ellen Jacquart
Keeper of the List

That might be a lot easier said than done.  Finding the right doctor is difficult.   Credentials and fame won’t tell us much. The top tier of MPN specialists are researching, writing, traveling, presenting at international meetings,  running clinical trials, applying for grants in addition to their consultations and clinical rounds. Some are inherently excellent physicians and it’s well worth waiting for a consultation.  Others have lined up on the side of one therapy or another or simply don’t have time or a mind open enough to really look at the patient seated before them in the examination room.

We’re patients and caregivers. Where can we turn?  Can we trust every prescription simply because the doctor is wearing a white coat?  How can we find  a trusted, competent, open-minded and compassionate physician?

We can turn to each other.  And to Ellen. 

For years, since September, 2011, MPNforum has been collecting MPN patient recommendations and openly publishing the List of Hematologists in every issue.  For much of that time, Ellen Jacquart has volunteered to do the hard work of building, curating and programming the List.  Tens of thousands of MPN patients and caregivers have visited that page.  Often the recommending patient is available to talk about her or his hematologist and why this might work for others.

The List is a starting point in our search for a good hematologist.   Thank you Ellen and all our fellow patients who took the time to share their good fortune in finding a doctor worth recommending.

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Patient Power and MPN Voice join forces to produce on-line MPN forum. Tomorrow!

Didn’t register for the Friday, July 24 MPD Voice Patients’ Forum on-time? Haven’t got the fare, etc. to London?   No problem. You can register right here, right now and join in from the comfort of your home.

Just set your calendar. (6PM London time is 1PM in New York.) claire ash vidThanks to the combined efforts of MPD Voice and Patient Power you can attend the Forum right from your own computer.  And evenAndrew at ASH cropped if you can’t make the on-line stream of this live Patient Forum direct from London, you can still catch up on the highlights via video clips produced by Andrew Schorr and his crew and made available on the websites of MPD Voice and Patient Power websites.

finger pointing small  If you would like to submit a question the MPN Voice hosts will try to answer it during the forum. Just email it to info@mpnvoice.org.uk

Register now to attend online. You will be redirected to the Zoom registration page and get a confirmation email and instructions for attending the forum online. Here’s the full program. 

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Beatrice found her match. Now she needs a hand. Now she needs us

The upcoming CREATE seminar is a path to  explore stem cell transplant through gene editing.

Beatrice and her boys   Photo: Scott Avra

Beatrice and her boys

While it may eventually solve the challenges of matched donors and GVHD it won’t address the mundane, stressful and often insurmountable challenges of MPN patients facing the need for support. Help in picking up the laundry of life, help in meeting the formidable financial burdens of transplant and recovery, of temporary housing, child and animal care, travel and all the rest.

After a long wait for a matched unrelated stem cell donor,  Beatrice,  a single mother of two boys, is scheduled to begin the process the end of September.  She has rallied friends to handle much of the work she will have to put aside for 100 days or more.

 If you can help with fund-raising, suggest organizations that can help financially, if you’re able to organize events on-line or in your community please contact ourMPNforum@gmail.com or simply leave a comment, below.    We really are in this together.

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The way CRISPR/Cas9 works — from Jennifer Doudna

jenifer at CHSL intCROPPED

Cold Springs Harbor Labs Symposium May 30,2015  (Interview here) 

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You can read the Stem Cell Transplant special issue of the Q right here!   Plus Archives:   How I treat MPNs? …Silver, Mesa, Hasselbalch, Harrison … definitive paper on  Aspirin, Platelets and Thrombosis… by J.J. Michiels Interferon instructions for my patients… H.C. Hasselbalch MQJ3header line

The List of Patient-Recommended Hematologists

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

mGEN-logo FINAL tightThe MPN Genetics Network

The Catalog of MPNforum Articles. ..

Subscribe to MPNforum

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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

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2015. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Unauthorized use and/or duplication of this material without express and written permission is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

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Comments on: "August, 2015" (6)

  1. Jason Ligas said:

    Have you heard anything about Imetelstat trial that just started enrolling by JNJ?

    • Hi,Jason… There’s been a recruitment notice for this trial up on the http://www.clinicaltrials.gov site for a few months. It’s the official word and worth checking if you’re following a trial. Just type in the name of the drug when you reach the page.

      Good luck,

  2. Susan Fogelson said:

    Again, Zhen, thanks for a wonderful issue!
    Susan Fogelson

    • Thank you, Susan. There’s a lot happening. Making a start on gene editing for MPN SCT alone would be a full issue…And then there’s Ross Levine’s breakthrough work on CHZ868 and the next generation JAK inhibitor. (Plus how could you resist publishing an interview featuring Terri Lebinson’s Pajama Diaries.) Tuesday we publish the new List of Hematologist’s Ellen has put together…and then a short break before organizing for the Fall. Hope your Summer is going well.

  3. There is an organization called the PAN Foundation that I was referred to when I had to change insurance and my copay went up. They offer grants to people with insurance and chronic conditions such as cancer. They have a site where you put in your information and they give you feedback then if you are eligible. The income amounts they allow are quite generous and it is especially easy to use for prescriptions. Hopefully this will help my fellow MPNers!

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