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In the beginning there were legal pads

Katy's questions about conference have had my mind churning about all the things to tell a new person about conference. The Hermansky-Pudlak Syndrome Conference really is an amazing thing. It grows about 20 percent a year.

The very first HPS Conference was held at the Appell dining room table with I think about four families. Seeing the home video really is a treat both because it's so hard to believe we started so humbly and because it's amazing to see how far we've come. At the first conference the Appells invited some of the world's leading rare disease researchers to a "medical conference" at their house. And, they actually showed up!

The home video is a riot. There's a guy drawing pictures of DNA on a yellow legal pad because no one thought to have a flip chart. All the while the kids are running around the table, in and out of the kitchen and living room - until Ashley's room became "child care." Every time I think about it it's just amazing to me.

The next year's video is equally "cute." The conference had grown to something like 10 families and thus had to be moved to the Appell basement. Flip charts made an appearance and the children were kept upstairs.

But the funniest thing about the home video to me are the urine collection jugs. Dr. Gahl, at that time brand new to HPS research, wanted urine samples from everyone. Well, how do you keep urine cold in the winter in New York? You line it up in a snow bank on the back porch of course! So there was a row of the urine collection jugs like they use at NIH, bright orange jugs, with every one's name on their jug all lined up in the snowbank. Dr. Gahl had the privilege that year of driving back to Washington, DC with something like 30 jugs of urine in his car. Can you imagine if he'd been stopped by the cops? Ahhh, the things we do for science!

Last year's conference had about 220 people in attendance. It was the first year we were able to have multiple sessions going on at once, something we're doing again this year. We've come a long way baby! But, we've got so much further to go!

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