Science & Medicine

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Our worst fears, our best hope

Corruption: The Worst Thing We Face…Gene Editing: Our Best Hope.

.Fedratinib was dead in the water…suspended by the FDA, aborted by its sponsor, Sanofi.

.This year, bought by Celgene, Fedratinib, renamed Inrebic, was approved by the FDA.  Last month Bristol-Myers Squibb acquired Celgene for $74 BILLION.  Notte: Incyte’s Jakafi raked in $1.4 billion in annual MPN sales last year.

.It’s all part of the MPN Gold Rush that transformed our rare disease into rock star status. And has corrupted our MPN life.

.Read about it the January , 2020 MPNforum…PLUS Good news: Gene editing closes in on blood cancers.  The upgraded MAGIC MPN symptom calculator; And a fresh update of the List of Patient-recommended Hematologists.

.Available now at:

. Happy holidays,


The MPN Gold Rush

Your pre-publication copy is now available.






Just a couple of years ago Sanofi’s fedratinib – a Jakafi competitor — was dead in the water. Its Phase 3 clinical trial was suspended by the FDA. The trial was aborted by its sponsor, Sanofi.

This year, in the hands of Celgene, the drug was revived as inrebic and approved by the FDA. Last month Bristol-Myers Squibb acquired Celgene for $74 Billion.

It’s part of the MPN Gold Rush that transformed our rare disease into rock star status with Incyte’s Jakafi rocketing to $1.4 billion in MF annual sales.  And it complicates our MPN lives.

It all started with a tube of skin cream…

That’s the lead story of the January 2020 MPNforum…PLUS Good news as gene editing closes in on blood cancers. AND a fresh update of the List of Patient-recommended Hematologists.

Your MPNforum pre-publication copy is available now at


You have the weekend to look it over before publication so do please shoot any corrections or comments to us:


Happy holidays,






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

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

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:

Summer, 2019 Forum On-line Now

Summertime Reading – MPforum AVAILABLE NOW


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

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:

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!

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