Archive for the ‘Uncategorized’ Category
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 www.mpnforum.com
If you or your loved one have hope for a cure…you can thank Robert Rosen.
For story and video:
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!
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.
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