MPNforum Magazine

We said good bye for the summer. We  published MPNforum and the MPN Quarterly Journal and didn’t plan to see you again until September.

But a few things happened to change all that.  Events in the past two weeks drove publication of this special summer bulletin.

Kelley Lanier 

One of the MPN community’s good friends, ejected from the Mayo Clinic, Rochester  CYT-387  trial, contracted pneumonia shortly afterward. Two weeks ago, he succumbed.  The story and a tribute to Kelley Lanier is here.

Pacritinib steps into the ring  for the final rounds.

It’s been a long time coming but now a JAK2/FLT3 inhibitor with real promise for myelofibrosis patients with low platelets is in Phase 3 test.  Here’s all the background, performance, and contact information you need to get up to date.  if you’ve failed ruxolitinib. (Jakafi) or have been disqualified because of thrombocytopenia, this might be an option for you. (All about pacritinib, here.)

The Foundation — A chance to do  some good.

We don’t have to agree with every policy of the MPN Research Foundation and they don’t always agree with MPNforum…but why quibble. These are the good folks who power the most significant, scientific MPN basic research.  Period.  They are our best and only option.

Everything we’ve learned in the past decade about how this disease works, all the big breakthroughs like JAK-2 and CAL-R and everything in between, bear the Foundation’s fingerprints.

They search out scientists, initiate creative projects, scrupulously vet grant proposals and shell out millions – over $10 million so far – for MPN research. (And the top two officers receive bupkes. zero compensation.)

I imagine I’m about as far below the poverty line as anyone in our community but I donate to the MPN Research Foundation.  It’s just naked self- interest, hedging the bets for me and my MPN friends.  Consider it. The opportunity is here.  It’s quick and easy and the benefits last a lifetime.

And now there’s an easy additional way to help our cause.  We’re in favor of buying Local. Truth is though, like you. we  buy stuff from Amazon anyhow. Without changing anything else you can buy through Amazon Smile and designate the MPN Research Foundation as your beneficiary charity.  That way a percentage of every Amazon purchase you make goes to our Foundation,.

Check it out. The link is here.

Become a Patient Advocate

The FDA green light we were given to proceed in developing a Patient Advocate program means some of us need to take action this summer.  Fielding a Patient Advocate for clinical trials requires candidates step forward to participate in a training and certification program.  Proposals–  including responsibilities and compensation– will be sent to Sponsors and Contract Research Organizations.  If you’re interested, e-mail ourMPNforum@gmail.com and put “Patient Advocate” in the subject line and anything you care to say in the body .

FDA — Appeal rejected.  We’re not the only ones.  ALL TRIALS are our allies. 

 The FDA has rejected two requests for clinical trial information  under the Freedom of Information Act and two formal appeals. We wanted to know what Sanofi knew about the dangers inherent in its experimental drug and when the FDA found out about it.   The need to know — the right to know — about clinical trials in which we volunteer is   critically important to our doctors and to all of us. ALL TRIALS is doing something about it.  Please see the video and consider participating.

And now…

…See you all in September.  Be safe, feel good, have fun.