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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!

Whatever happened to Zhenya






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

The story is at

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



And now we begin. (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.

Hard to figure.




It’s Hard to Figure Out.

Could be the way I went about it. MPNforum  has a program for 2019 that needs funding and volunteers.  Several very strong volunteers came forward and you’ll meet them in February.  But not donations, at least not enough to get our program launched:

The top items on our list are: Mutation testing for all MPN patients, monitoring of every MPN clinical trials, and support for  gene therapy and interferon.  Beyond publishing, this year’s program calls for meeting with opinion leaders and producing the occasional piece of literature or press release.

So it’s hard to say if (1) MPNforum members don’t want the program, (2) never got around to reading about it in our annual report (,  (3) don’t agree with what we’ve been publishing, or (4)  just didn’t realize  this was a call for donations.

We have the volunteer staff and medical  specialists on board.  All we need is a enough cash to get the job done.

MPNforum is a community project, patient driven and all volunteer. Your donations fund the publications and the programs. We have no employees. We receive no ad revenues. No grants. No circulation fees. No revenue from sale of user data.  !00% of donations goes into operations and programs. All we have is each other. Unless we don’t.

You can donate and volunteer on our Annual Report page: 

Or just click on this link for monthly and one time donations.  And thank you.

MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

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