@Sasha (or anyone!) - I have a question, it feels rather dumb, but anyways, are the Open Medicine Institute in Mountain View and the Open Medicine Foundation in Agoura Hills (per its website) related? The names are way too similar for different entities. I'm going to make a donation to the OMF but I think in the past I may have donated to OMI, thinking it was OMF .......
Also I'm a little confused (I guess I'm just foggy today!), I thought OMF was up north in Stanford perhaps? And Ron Davis was at the San Francisco event. But Agoura Hills is in southern California --
The Open Medicine Foundation, OMF, is a completely independent organization from the Open Medicine Institute, OMI.
The OMF was started by Linda Tannenbaum to raise money for neuroimmune diseases, upon a request by Andy Kogelnik. She started it by herself, is the CEO, and it's completely independent of OMI. Linda was fundraising for the OMI for a while at the beginning.
The OMI is Andy Kogelnik's Institute where he maintains his clinical practice, as does David Kaufman, and they do some research.
I met Linda at a support group meeting a few years ago, and she came over to our home that very day to meet Ron and help us with tips for fundraising for our Chronic Fatigue Syndrome Research Center at Stanford University.
They quickly realized that if they teamed up they would be a powerful team, with Linda leading the fundraising and Ron being the Director of the OMF Scientific Advisory Board, in charge of all the research.
This allowed Ron to realize his mission of putting together an amazing team of Nobel Laureates and National Academy of Sciences members, all with long and deep track records of success in science and publishing, creative, out of the box thinking, and a low "arrogance to intellect" ratio, as Ron puts it. These people are truly amazing and brilliant, and scientists like this haven't ever tried to tackle ME/CFS before.
So now OMF fundraises for the reserach that Ron plans and supervises (and does, along with other top-notch scientists that he recruits), and OMF is not raising money for OMI any more.
Andy, at OMI, is on the Scientific Advisory Board for OMF that Ron put together, and we need a doctor to recruit patients for the studies, to do the blood draws, etc, and luckily, Andy is really smart and has some research capability at OMI so he is doing some of the tests.
Most of the tests are being done elsewhere, at the very best possible places that exist, with the most cutting edge capabilities.
The samples are being sent to Stanford's immunology dept and genetics dept, to Ron's Genome Center (where the CFS Research Center at Stanford is), to Harvard, to Dr. Naviaux, at UCSD, to Metabolon, a company that Ron has consulted with over the years as they developed their mass spectrometry to measure metabolites, and to other labs that have agreed to do the tests at their cost, saving a LOT of money.
The CFS Research Center at Stanford is where Ron has a growing team of amazing scientists from several disciplines (different from the OMF Scientific Advisory Board), including Laurel Crosby, some engineers, some bioinformatics people, great smart Stanford people, and they meet every week to share progress, thoughts and plan together.
They get calls now from doctors and researchers all over that are beginning to hear about this from Ron (who has great credibility, so if he says it's a good thing to work on, they take notice) and are interested in finding out more and collaborating.
He even has some students working on it - great progress because that used to be a death knell for a career if you worked on CFS. Not any more in Ron's lab!
People sometimes get confused about where to donate. The main place is OMF, because Linda is able to pay for the research anywhere Ron wants to get it done, and the more OMF raises, the more credibility she has to raise more.
Money given to the CFS Research Center at Stanford must be spent at Stanford on Ron's CFS research, or the work in the immunology department or genetics department, all on Ron's CFS work for the End ME/CFS project - just the Stanford parts of it. So the money given to either place goes to the CFS work Ron is doing or directing.
But the best place to donate is OMF. I hope this helps. I know it's confusing.
OMF is run in Southern California by Linda Tannenbaum, who is CEO. OMI, where Andy Kogelnik's clinic is, is in Mountain View, CA. Ron Davis is a professor of genetics and biochemistry at Stanford, Director of the Stanford Genome Technology Center, and Director of the CFS Research Center at Stanford and lives in Palo Alto and works at Stanford.
Linda flew up from S Cal to attend the event on Wednesday. She is AWESOME. She is going to the London conference with Ron. They are a great team.
I help behind the scenes with ideas and strategies and writing, and whatever else I can do. Twitter. LOL. And Ashley, our daughter, Whitney's sister, does lots of advocacy and helps in lots of ways too. She manages the CFSResearch Center fb page and does what she can for fundraising too.
We are totally dedicated to solving this puzzle as fast as possible!
