Dr. Jazz and a truly massive eczema research grant

Today's a special day for me: yes, I'm officially one year older. At this stage of life, I'm satisfied with "Happy birthday, daddy" from the kid who can talk, a slobbery mauling from the one who can't, and a rendition of "Happy Birthday" from Hidden B, who doesn't sing out of tune so much as she sings each line in a different key.

My birthday present to myself? Either I am going to crack open that bottle of Aussie white wine and enjoy a few glasses, or I'm NOT going to open it, and spare myself the consequent itching. Ah, it's no contest: I'm going to open the bottle. You only live once.

I made my first inquiries today, to a doctor I work with professionally, about how to start a foundation. I'll call him Dr. Jazz, since he likes to play jazz on his stereo when he's in the office, so when you're in the conference room you feel like all you need is a highball and a cigarette. Dr. Jazz is deeply involved in translational research (that is, turning bench science into cures). His specialty is prostate cancer. He didn't have a ready answer for me-- he said that if someone suddenly handed me $100k I could, for starters, open a bank account in the name of the foundation. But to create a real foundation you need a lawyer. There has to be a lawyer out there willing to bill this pro bono. Dr. Jazz happens to know a wealthy donor who is on the boards of several patient advocacy foundations, and he's going to put me in touch with him, so I can get some advice and maybe an introduction.

Everyone knows that in the U.S., the National Institutes of Health are by far the most important source of funding for biomedical research. The NIH makes its funding numbers public, and you can look them up. Go to projectreporter.nih.gov and use the search engine. Type in "eczema" and see what comes up.

So I made an interesting discovery. About 45 grants were given in fiscal year 2010. Since some grants are portioned out over several years, and some major grants may have been given in 2008 or 2009 or whatever and still be active, this is just a snapshot, but it's very useful. Most of the grants are for amounts in the range $300k to $500k, with a handful at $2M. So $1M is clearly enough to fund two significant projects, but not a remarkable amount-- I am not out of line to plan on raising $1M.

Here's the humdinger. One of the grants is for $32M. It is by far the largest, two orders of magnitude greater than the median. Donald Leung (in the NIH database, he's listed as "David," but that's not his name) at the National Jewish Health Center in Denver, Colorado, is the principal investigator for an absolutely massive project called the Atopic Dermatitis Research Network. The ADRN brings together scientists from ten campuses for a five-year effort to understand and contain staph-related infections in people with eczema.

I'm going to find out more about the ADRN. From my perspective as a patient with eczema, and the father of one (and cousin, and brother, and grandson) staph infections are a truly nasty aspect of the condition. I've had two severe whole-body outbreaks in my life and I continually experience minor infections that I'm aware could always bust out into something that could put me in hospital. The possibility that the ADRN could produce valuable knowledge and real therapeutics is exciting.

Second thoughts? Nope

Since my first post I've certainly had second thoughts. What the hell was I doing, signing up for this? Raise a million bucks? I was watching an episode of Life on DVD with Hidden B, and suddenly I broke out in a cold sweat. It's like the time someone signed me up for the talent show in grad school and there's a week to go and I still haven't figured out what I'll be doing; all I know is that I'll be making an ass of myself in front of a lot of people.

Fortunately the internet allows me a degree of anonymity. I'll be making an ass of myself but I'll have a paper bag over my head. I'm still serious about this thing.

What really freaked me out at first was not the thought of writing, but the thought that at some point someone might write me seriously and offer funding, but demand that I tell them what I planned to do with it. Let me be perfectly clear: nobody's handing ME money. I'm going to set up a foundation with pro bono legal advice, and get a first-class scientific advisory board. My model for this is the Multiple Myeloma Research Foundation--something I have to look into in greater detail-- but those guys have it worked out right. They distribute money, but they make damn sure the scientists receiving it do what they're supposed to. They set goals and run the foundation like a business.

A random thought that occurred to me. When I said $1 million, I meant $1 million USD. (I'm a dual Canadian-American citizen and ought to make the distinction.) But that's just an amount. The currency doesn't matter.

What might matter, I think, is where drug trials get done, when it comes to that. Drug trials probably have to be done in the U.S. If the FDA doesn't approve a drug it won't have the necessary market potential to make it viable to produce.