Science & Medicine

Whose voice will be heard?


Who’s going to dominate the MPN medical narrative in 2019?

.On the one hand there’s Big Pharma defending their billion dollar drugs with multi-million dollar advertising and PR budgets. We’ve seen close-up how devastating their clinical trials and inflated claims can be. How manipulative their messaging. Think Sanofi. Think Geron and Imetelstat. Think Novartis/Incyte. CYT387, Momelotinib. The list is long and dismal.

.And then there’s our MPNforum. Patients and caregivers. All volunteer, entirely patient-funded with strong allies among volunteer MPN specialists and nonprofits.

.We’re puny… but we brought CRISPR and gene therapy to the MPN community. We’re tiny., but we exposed the Sanofi behind-the-scenes actions that led to the shameful blowup of the Fedratinib trial. Together, we pushed the Fatigue Project, the Zebra Coalition for patient advocates, and creation of the stem cell transplant timing tool. The Interferon papers.

.We need an independent voice in these challenging times when the potential for precision medicine and gene therapy is so great and the massive weight of the old line drug industry is so determined to hold us back. We need a strong voice in 2019. In this new environment MPNforum can no longer do it on $10.86 a day with a skeleton crew

.Join the MPNforum Patient Board

.Volunteer to help fact check stories. Proofread and edit. Report. Contact patients. Conduct surveys and phone interviews. Advise…Donate… Help build the funding we need to meet the challenges of 2019, to be in touch with labs, medical institutions, and regulators. to bring objective, fact-based reporting to MPN patients. No drug money, no ads.   You are the only source of operating funds for the Forum.

.The Annual Report of Operations with specific operational objectives offers an easy way to volunteer and donate. We don’t have to submit to the money making narrative of the pharmaceutical industry. Join the MPN Patient Revolution and help each other find the best path forward.

To Donate

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

To Volunteer

Select any of the areas below that appeal to you and indicate whether you’re are making an open ended commitment or can  allocate specific times.  In addition, you can volunteer to engage in any aspect of MPNforum creation and production including reporting, proofreading, fact-checking, Internet production. Or simply volunteer and provide a good time to talk about how you might get involved.

1: Research and reporting 2. Monitoring clinical trials and medical claims 3. Providing interferon documentation to patients. 4.  Reaching out to non-MPN physicians.  5. Scientific reporting  6. Coordination of patient-driven initiatives  7.Creation of on-line patient events.

To get the ball rolling and make a difference in 2019, email us:  Subject:  Volunteer. (And thank you

Comments on: "Whose voice will be heard?" (2)

  1. kirk caouette said:

    Forgive me for being sceptical, but Big Pharma will reap the rewards if anyone stumbles upon a safe treatment that is patentable. All the hard work and money that this group will raise will ultimately be used by a huge company that will take our information and sell it back to us and make billions of dollars. These are the hard facts that we fight against. But there are already some very good treatments for MF that are being completely ignored by this group and by all the researchers working on a cure for MF. There are very effective treatments for fatigue and for itchy legs that are completely safe and natural, but they are never once mentioned in any of this. Treatments that are nearly 100% effective for relieving the symptoms… and yet nobody is talking about them. Therefore I am very sceptical of this group and all patient support groups who ask for money.

  2. Louise Haugh said:

    Zen, I would like to offer to Volunteer. Not sure where I could fit in, but, I am good on the phone and in talking with the public. Please let me know if I can help.

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