Sometimes LIKING just isn’t enough
I believe passionately in MPNforum and its mission. For me, MPNforum is a personal pathway to immersion in life and service to blood brothers and sisters. Sometimes that mindset can screw up a simple message.
Our Small Donation Program promotion, launched before the weekend, isn’t about your money. You probably figured that out by now.
We don’t need your money as much as we need you. If we’re going to make a difference, if we’re going to make our need for safe clinical trials, fair drug pricing, and get meaningful help in facing the medical, economic and social challenges of myeloproliferative neoplasm, we need the combined voices – and votes — of thousands of us. Together.
MPNforum Magazine doesn’t cost much out of pocket to run for a year and we can usually cover that through small donations. Many of you could easily cover the whole nut with a single check. But we don’t do that. MPNforum is a collective effort and that means ownership by all of us.
In our first post, we asked you to be different. We returned to a Zebra photo as a reminder that together we have already proved something. When we come together in our thousands we’re a force to be considered. This year, in response to our petition, the key people at the FDA sat down with the Zebra Coalition to address MPN patient concerns.
I think we need to be more direct about why we actually need you to contribute through the Small Donation Program. Instead of looking back at achievements, we need to look forward to the work ahead.
MPN drug pricing is out of control. For Medicare patients, co-payments alone are $2000 or more per month. As MPN patients we’re on our own in contesting insurance denials, in influencing clinical trials or basic research, in getting support for the combined challenges we face in securing adequate treatment.
The Forum evolved from a little blog to an international MPN patient service used by tens of thousands of us worldwide. The next step is to combine our patient support activities into an organization with structure and funding to provide real human services to MPN patients — clinical trial advocacy, referrals, legal aid, economic support, travel services to treatment and trials, political lobbying for legislation we need for greater NIH research funding.
In 2015 we can make a beginning by forming a formal non profit action committee.. For this we do need you on board. Your Small Donation Program gift is your vote of confidence, your endorsement of MPNforum and the direction of our growth. It’s what you can do right now when LIKE really isn’t enough.
Here’s the donation page. https://mpnforum.com/the-difference/
Together we can do it.