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 (https://mpnforum.com/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: https://mpnforum.com/annual-report/
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
MPNforum Magazine 
Comments on: "Hard to figure." (6)
I am on Jakafi, so you know how much I am paying despite the insurance. I support the MPN forum wholeheartedly. Is there a chapter existing in the Kansas City, Missouri area?
I’m not sure, Karen but you might contact Michelle Woerhle at the MPN Research Foundation and Ann Brazeau at MPN Advocacy and Education… they’re both in touch with local MPN patient support groups. Good luck!
This is the one publication I look forward to. If I was not in the process of moving I would volunteer. I donate every year, maybe not a lot but a little. I encourage others to do so as well. Zhen, if you need more money I will donate again on my next retirement check.
Thanks, Ann, you’ve done more than your share. We’ll get the funding we need and, in any case, work with what funding we have to execute this year’s program. Moving more into direct actions, working with the FDA, reaching out to non-specializing MPN physicians, lobbying for universal MPN mutational testing, supporting interferon access with comprehensive packages, supporting gene therapy and doing what we can to clean up the clinical trial mess. At the least we’ll make a solid beginning as our MPN community comes together.
We are paying exorbitant amounts of money for co-pays. We have no extra $ to donate to anything.
It’s not lack of interest but lack of extra disposable income.
Thanks for letting us know but Please don’t worry about it. You can contribute your ideas, energy and time… when you can.