Friday, September 24, 2010

Let's start with $1 million

What is the purpose of this blog?

Hey, I'm allowed to be ambitious.

I want to end eczema. Nobody should have to live with this nasty condition. It can make your life hellish; it can make you wish it was over. I know all about eczema. I was born with it about 40 years ago and it has been with me ever since. It's in my family. My father's father had it. A cousin has it. My sister does. And guess what, I've managed to pass it on to my daughter.

To start with, I want to raise a million dollars for eczema research. That's right, a million bucks. This is not a number I associate with any bank account of mine. But I work at a major research university and I know roughly what it takes to get a real project that produces results off the ground.

In fact, a million isn't anywhere near enough to start solving this problem. But we have to start somewhere.

In posts to come I will talk about what we might get started with a million dollars. Now let me say what inspired me to get off my ass and write.

Last year I signed up for the newsletter from the National Eczema Association. These folks are wonderful. I felt like "at last, here's a charity that means something to me." I'm always getting unsolicited phone calls from foundations for breast cancer research, AIDS, veterans, policemen, terminally ill children. And I know that these are all worthy causes. Hell, I have relatives who have died from cancer and someone dear to me is living with it. But I live every day with my personal curse and I never hear about anyone doing anything for me. Now it's not even about me--it's about my children and (I hope) grandchildren. And anyone else who lives with the pain and shame of chronic itch.

So yesterday I get the NEA's annual report in the mail. It lists all their accounting numbers and the times they were mentioned in the media. In short, eczema is not on the media map. And the NEA's budget is too small by a factor of 10, if I'm being generous. Total revenues for fiscal year 2009: $529,668. Total expenses: $525,582. Of the expenses, for support, education, and awareness: $372, 415. For research: $30,961.

That's right, thirty-one thousand dollars.

My business is science, and I know $31k is not enough to pay a single graduate student salary for a year. (I also know that the National Institutes of Health are the major research funding agency in the U.S., and I would like to find out at what level they're supporting eczema research.) But I am convinced, and I have evidence, that patient advocacy groups can make a difference. For one thing, the NIH tends to support basic research and loses interest once that research becomes useful for anything. Patients themselves only care about results.

I know that wealthy philanthropists regularly write checks for many millions of dollars. One or more of these people either has eczema or has a child or grandchild with it. And they might like to donate, but it hasn't occurred to them that they can, or they don't know where to give, or which scientists or doctors are really worth supporting.

I'm going to find the big donors and get their money to work. My hope is that this blog helps them find me. I'll work out the details as I go along. Are you with me?

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