Dr. Davis: Yeah, I'm Ron Davis. I'm a professor of biochemistry and genetics at Stanford University. I'm also the director of the Stanford Genome Technology Center. I've applied twice to NIH and been turned down twice because they didn't like my hypothesis.
And we don't know what this disease is! We have to figure it out. And I think this thing is going to be solvable. We have made more progress with one researcher in my lab in the last year than the entire world in the past thirty.
And that's all done with just donations. And I think we can really do a lot if a lot of people join this, and what we need are good researchers, and people with a good track record, and there are a lot of them.
And I've gotten two other faculty - the chair of genetics and the chair of immunology - to join me.
Interviewer: What are their names?
Dr. Davis: That's Mark Davis in immunology and Mike Snyder in genetics. And they're all hot to work on this.
Interviewer (indicating the board of photos that Dr. Davis is holding): Can you explain this?
Dr. Davis: Well, this is just some pictures of my son when he was young and active and a wonderful person: there he is (points to first picture of Whitney Dafoe as a young child) protecting his sister and then down here at the bottom is what he looks like now (points to pictures of adult Whitney sick in bed). And he's severely ill and I'm one of the caretakers and my wife is the other.
And he requires constant care. He can't eat, he can't talk.
Interviewer: Obviously he's what inspired you to an extent, but did you know about it beforehand?
Dr. Davis: I had a friend that I knew had it, and I didn't understand what it was. And a lot of people have told me that it's not real, but as soon as my son came down with it, it's very real. Because I know him, and I know that he wouldn't want to fake an illness. He's a very dynamic, outgoing person. And so it was very clearly a real disease and when we collected some data on it, absolutely clear. There's a lot wrong. A lot.
And the medical community does a few tests, and those tests come back normal, and they do with my son... (indicates Whitney's photos) look at him, he's not normal. But when we do a more extensive analysis, we have found 193 things that are wrong, and some of those are probably also wrong in other patients. And you can't just use your standard tests.
The medical community tests for 20 things. We're testing for thousands.
Interviewer: Is it worth going into any of that right now, or is it (inaudible).
Dr. Davis: Well, the biggest breakthrough I think we've seen in this disease is being able to do what's called "metabolomics". And metabolomics deals with small molecules that are in your body and they have not been looked at extensively, but they're often what doctors do tests for, but they only test for twenty or thirty things.
The new technologies allow us to do hundreds simultaneously. So they normally take 10 mls of blood to do one. With this technology you can take a tenth of a milliliter and do 700. And those show a lot of abnormalities.
And one thing they show is that your energy levels are obviously very low. Your whole cycle for generating energy is off. We don't know why, but we know you're not generating the right biochemistry to generate energy. You can't really metabolise the glucose properly, they cannot metabolise fat properly, they don't have any energy. And this (indicates Whitney's photo) is what happens when you don't have energy. And we've got to figure out what's blocking it.
Dr. Davis: Well, it's a fascinating biological, biochemical and genetic problem. A fantastic opportunity for people, you know? When is it that you have a disease that's a major disease that affects something like 2% of the population that you don't know anything about and didn't even know it existed?
Well, what we really need is research funding for lots of investigators. And we really need NIH to step up to the plate and actually take responsibility for this problem and not just be passive and say, "Well, we don't get any good grants". Well, solve that problem!