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MAGIC

 

The MAGIC of good people working together.

We owe a debt of gratitude to 18 people, the MS3T all volunteer medical taskforce.

Sometimes, well below the radar, there are good people working for the benefit of MPN patients without reward, publicity, or even acknowledgement.

For nearly two years, work has been progressing on MAGIC, a simple graphic calculator to assess the risk status of myelofibrosis patients. This is a critically needed tool in an environment where most MPN patients are not treated by specialists and where the outcome of certain procedures depends on timing.

The MS3T Taskforce– contributing to and reviewing the original stem cell transplant timing tool–includes four hematologists (DoctorsClaire Harrison, Ruben Mesa, Richard Silver, Srdan Verstovsek) four transplant specialists (Doctors Koen Van Besien, Nicolaus Kroeger, Jeanne Palmer,Uday Popat) a hematopathologist (Dr. Attilio Orazi), the Scientific Director of CIBMT( Dr. Wael Saber), three MPN patients, Chris Harper, Beatrice Larroque, Marty Prager; and four patient advocates, Ann Brazeau, Ann Haehn, Barbara Van Husen, Michelle Woerhle.

MAGIC – the Myelofibrosis Assessment Graphic Internet Calculator— will soon find a permanent home with the original project sponsor, MPN Research Foundation. But you can preview MAGIC right now at https://www.mpn-magic.com/

Take it for a test drive and let your MPN friends know there’s now a quick. validated means to help us work with our docs in making therapeutic decisions.

Thank you…and thank you, MS3T,

Zhenya Senyak, Project Director

https://www.mpn-magic.com/

Advance copy of the July-August MPNforum

Here is your Advance Copy of the July-August 2019 MPNforum Magazine.
General publication is tomorrow,so if you have any questions or comments please let me know.
 (Until tomorrow afternoon, the URL is:https://mpnforum.com/julyx-2019/)
   Enjoy,
   Zhen
 

Summer, 2019 Forum On-line Now

Summertime Reading – MPforum AVAILABLE NOW

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Here are the 15 Top MPN mutations and how they affect us

Along with a free mutation reference manual …

AND The RESULTS: 1068 MPN patients and Genomic Testing..

Plus the updated LIST of patient recommended hematologists,.

It’s all at www.mpnforum.com

If you hope for a cure…

If you or your loved one have hope for a cure…you can thank Robert Rosen.

For story and video:
http://www.mpnresearchfoundation.org/Robert-Rosen-Memorial-Fund

Mutations drive MPNs…We can make genomic research routine.

 

 

 

Take the survey.

Mutations: the MPN cause and cure 

You can help open a new era in MPN diagnosis and treatment.

MPNs arise and are driven through mutations. The MPN Genomic Study Group –doctors, patients and caregivers — organized to help make mutational testing a standard of MPN practice. First step: Take a few minutes to complete this short survey.

Full results will be shared…and thank you!

 

https://docs.google.com/forms/d/e/1FAIpQLScFQutifXPIuY7uq4OZsekQJ7ZGJjtgvsc5dkAaclouvOoSMQ/viewform?usp=sf_link

Whatever happened to Zhenya

 

 

 

 

WHATEVER HAPPENED TO ZHENYA?

For weeks, I’ve been sick, weak and wandering in the shadow of the valley.

The story is at https://mpnforum.com/whatever-happened-to-zhenya/

(Warning: a couple of gross images and some quasi-religious references included.)

 

 

And now we begin. (Thank you.)

 

 

 

THE END. THE BEGINNING. (Thank you)
.
Today ends our funding and volunteer recruitment drive to support MPNforum’s 2019 patient advocacy programs. Although it looks like we might fall a little short of our financial goals, in some ways results far exceed our expectations.

We have a great new crew of volunteer staff and adequate funding to fully proceed with priority projects. We will be in touch with volunteers, 2019 donors and regular Forum contributing staff to review and sharpen focus..

I want to thank all who contributed or plan to contribute and assure every MPN patient we will work for significant results this year while maintaining the reporting standards of MPNforum Magazine.

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