Patient Community Comes Through
Just a couple of months ago, Davis was so concerned that the OMF’s inability to secure funding for an NIH research center grant would impact donations that he publicly shared some of the head-shaking comments by the reviewers.
Boy was he wrong. On Giving Tuesday the OMF hoped for $150K and got $450K. They parlayed that and other donations to fund a $1.2 million Collaborative Research Center Ron Davis has built at Stanford. Financially that put them on par with the three NIH funded ME/CFS research centers for at least this year.
That money is going to fund Mark Davis’s enticing T-cell work, Mike Snyder’s huge genetics, genomic and immune family study and Ron Davis’s nano-needle and other work.
Pineapple Fund Steps In Again
Then a couple of weeks ago came a $1 million grant from the Pineapple Fund. Yesterday, impressed and probably shocked by the outpouring of thanks from the ME/CFS community – plus strong support from the research community – Pine just added in another $4 million to the $1 million donation.
Get this – with all the many worthy projects the Pineapple Fund is supporting – the sub Saharan water project, the healthcare for everyone project, the fighting aging project – Pine has chosen to give the OMF one of his biggest donations
Pine’s clearly got it about ME/CFS. He/she knows the disease affects a lot of people, is very serious, and yet gets very little resources. Pine was looking to make a difference in people’s lives – and ME/CFS is a great place to do that. If any disease is due for a big jump in support it’s ME/CFS.
“I had known about ME/CFS for a while, and I know it is a serious condition without much in the way of treatment or research. I’ve recently received letters of support from esteemed academics in the field strongly supporting OMF, and that helped me make the decision!”
From the Open Medicine Foundation announcement:
“Thank you, Pineapple Fund, for seeing beyond the cloak of invisibility laid upon this horrid illness and recognizing the desperate need. The hope this provides is palpable.” Liane B.
A Harbinger of the Future?
The huge Pineapple Fund donation is hopefully a harbinger of the future. It suggests – as we know – that when people really get it about ME/CFS they’re often moved to support it.
Our story is our greatest asset which is why sharing it is so critical. It’s a horrible story – millions of ill people ignored by the NIH and doctors for decades – but it’s also a moving one. Davis’s sharing it again and again at Stanford has elicited strong support there. It recently elicited strong support and interest at the University of Texas. The shares from the patients surely helped Pine support the research so generously. For people who really want to make a difference ME/CFS is a natural.
From the Open Medicine Foundation Announcement:
“Thank you for giving hope to people suffering with this disease. My son has had it for about 10 years, most of that time it was not recognized as an illness, let alone a serious one. A life full of exhaustion and pain may come to an end soon for him and other sufferers.” Ann W.
A New Problem
Now Ron Davis has a new problem. How to best spend all that money. The donation will quadruple the resources of the collaborative Research Institute and allow him to greatly accelerate his efforts. He’ll be able to hire researchers for multi-year stints – something he’s wanted to do for years.
All the work at Davis’s research center is exciting. I’m particularly intrigued to see if Davis can use the nano-needle to bring clarity to the energy problems in ME/CFS, uncover possible factors in the serum that are playing a role, develop a diagnostic test and test treatments. The Mark Davis T-cell study could determine what’s tweaking the immune system of ME/CFS patients. Then there’s the SJSU blood vessel study and the big Mike Snyder family study. Plus we’re waiting on the results of the severe patient study.
That’s a lot of work and a tremendous amount of movement for the Open Medicine Foundation in just five years. That movement is all the more remarkable given that neither Ron Davis nor Linda Tanenbaum had done anything like this before. Their creative approach to ME/CFS has been inspiring.
We shouldn’t expect that the $5 million is going to bring us the answer to ME/CFS – major diseases get hundreds of millions of dollars a year – but it’s going to jump start Ron Davis’s work – and who knows where that will lead…
2018 is starting off well