International MPN News, Science & Opinion

Do it for love

To bring about a major change, we’re asking for spare change.

Dollar love rev Do it for love

Think what it would mean if the general population knew what we were up against. If MPNs were as pressing a cause as other cancers or heart disease

We’re not on the radar of funding nonprofits, barely a blip on NIH. The basic scientific MPN research is being done mostly on the MPN Research Foundation’s dime. We can help raise awareness, raise funds, increase grants and support patient issues of safety, drug pricing, insurance.

We can do it if we act together.

MPNs are a rare disease but we are over 300,000 in the US alone, far more than enough to make legislators, regulators, and funding institutions take notice. When we act together. This is the shift in focus I was talking about in our Spring introduction .

Our scheduled Spring small donation drive launched Thursday. You may not have noticed since the launch was upstaged by the more pressing need to get help for the hundreds of myelofibrosis patients injured by the abrupt suspension of a clinical trial.

This time, it all worked out. The early response to our drive was excellent and, best of all, the FDA lifted its full clinical suspension of pacritinib. So now we can get on to the business of funding MPNforum for 2016.

Although our focus has shifted to direct action and MPN patient advocacy, some things have not changed. MPNforum is free. Nobody has to pay to read it or subscribe to get it. But it’s not cost-free to produce.

While nobody gets paid, not editors, writers, or production people, there are Internet, production, overhead, and travel costs that have to get covered. Our total annual budget runs from $3500 – $5500 with convention and meeting expenses accounting for the lion’s share. (As we reported, a free ticket to last year’s ASH plus a small consulting contract permitted us to bypass the Fall fundraiser.)

So many of us are involved in creating and following MPNforum that a very small donation from the active core is usually enough keep things going for the year.Now, we need more…and it can be easily done if you step up.

The challenge in 2016: We plan to maintain the MPNforum archives on the Internet, while publishing periodic updates. We have to get more solid financially to fund direct MPN support activities as well as the MPNforum publications. And we need to do it with you, the patients and caregivers in our MPN community, without reaching out to drug companies or advertisers.

So do what you can, please. Do not dig deep, Whatever works easily for you and your budget… so long as it’s under $100. We can fund the expanded MPNforum within the small donation program. But it does mean taking a few minutes to click on the DONATE button.

Many thanks,

Zhen and the whole MPNforum crew

Dollar love rev

 

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

 

 

 

 

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