Science & Medicine

Posts tagged ‘MPN Research Foundation’

 

Good morning…   Here your advance copy of tomorrow’s  MPNforum, Spring, 2017

This is a packed issue:   Three storiesPEPPE THE FIXER,  the ROBERT YOU NEVER KNEW and THE BIRTH OF YOUR MPN… plus a fresh update of  List of Patient Recommended Hematologists:  (now 251 MPN docs from 19 Nations)…. Breaking news of the powerful new MPN PATIENT REGISTRY that’s going to improve our odds,..NEWS from patients  around the MPN world…DIET AND INFLAMMATION…an expert panel on SCT from the archives…and more.

https://mpnforum.com/spring-2017/

          Enjoy

                   Zhen

As ever, please let me know if you run across any typos, errors, or problems so we can correct them before publishing tomorrow — ourMPNforum@gmail.com.  Many thanks.

Zhen

  • And of course you’re welcome to express your thoughts in the COMMENTS section that follows each story,.

 

January, 2016 MPNforum

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Farewell to a fallen friend.

So  what we are to each other in our MPN Internet Village? That’s this month’s MPNforum theme.

Five women traveled to Texas to say goodbye to KATHY DUBIN FLYNN shortly before her death.  Their photos and stories in a Tribute to KDF

BEATRICE LARROQUE shared each day of her stem cell transplant with us.  Now, 100+ days later, she booked flying trapeze and tango lessons…

MARINA SAMPENES PEED heads up the new volunteer MPN Support Network with a menu of medical, financial and social aid…

BARBARA VAN HUSEN president of the MPN Foundation uses the C word…

RUBEN MESA: Everything You Wanted to Know about MPN Science and Therapy …

ELLEN JACQUART releases a new, expanded List of Patient- Recommended Hematologists.. .

It’s all in the patient-supported January, 2016  MPNforum with plenty of room for your opinions and comments.

www.mpnforum.com

 

 

 

 

Thank you, Bozo…

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Thank you, Bozo.  Thank you, Jenny.  Thank you, all.

Tonight I drop Bozo off to be boarded for five days. Jenny goes to my cousin. And in the morning I head off to Orlando and the American Society of Hematology meeting.

Abandoning my parrot and dog to report on MPN therapeutic advances isn’t easy.

Looking forward to the MPNForum Issue

I hope it pays off.  Often it seems we already know the preliminary results of most drug research affecting MPNs. I don’t anticipate a surprise like the unveiling of a new CAL-R-type discovery.

This year we have all lost more friends, close and far, to MF and we have seen friends restored to health through stem cell transplant. Despite the pain and suffering there is a reason for great hope.  It seems possible the end of this long and deadly road is in sight…and shortly, many more of us will come safely through SCT.

This is the year gene therapy grabbed the headlines and emerged as our best therapeutic hope.  That alone is worth the trip. Just a few weeks ago we learned Dr. Waseem Kasim and his group beat back a little girl’s leukemia using gene therapy…and, so far, it seems very much like a full cure.

Friday morning, at the Renaissance Hotel in Orlando, a small group of physicians and scientists will assemble for a conversation about gene therapy and its prospective role in cleaning our blood to permit stem cell transplant with our own cleared blood.  If that can be done – and much of the technology is already in place —  it will be huge for all of us. It will spell the end of delays as our physicians search for a matched donor. And it might totally end or largely eliminate Graft Versus Host Disease.

More than that, this meeting, this CREATE seminar is a coming together of genetic engineers, research hematologists, clinical hematologists and transplant specialists to start exploring the possibilities.

Gene therapy is not limited to Stem Cell Transplant since repair and replacement of mutated genes is already far advanced in other blood conditions.

This work has been funded by the MPN Research Foundation. The organization and launch of MPN Genetics Network, the recruitment, advertising, and production work, the hotel, travel, materials… all paid for by the Foundation.  That funding, along with more than a half-million dollars in new CRISPR research grants and  the whole-hearted MPNRF staff support of the CREATE Seminar – special thanks to Raquel Nunez and Michelle Woerhle — has enabled this vital initiative.

In recognition of the significance of gene therapy, the MPN community’s good friends, Dr. Richard Silver (CR&T), Dr. Srdan Verstovsek (MD Anderson, and Dr. Ruben Mesa (Mayo Clinic/Scottsdale) contributed funds to help defray costs of the CREATE Seminar.

Meantime, if you’re looking for a place to make a substantial yearend donation, invest in our common future and give to our MPN Research Foundation..

Thank you…back to you in a few weeks with a full report on ASH and CREATE.

Zhen

Advance Copy February MPNforum/TSR

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Hi, there…

The  ADVANCE MPNforum/TSR February Edition for Subscribers is available HERE.

In this issue:

    Zapping the JAK2 mutant clone… CRISPR Hope or Hype?

    Video: Inside the MPN Research Foundation (NOT what you think)

   CRISPR Meetings & Mayhem …Bill Gates on CRISPR

As ever, you’re the first to have a look so PLEASE alert me to any errors (ourMPNforum,@gmail.com) that bear correction and do COMMENT as you see fit.

    Many thanks, stay warm…

    Zhen

 

https://mpnforum.com/a-little-problem/

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