Living on the frontlines

Accomplished lung remodeling scientist Robert M. Senior delivered the J. Burns Amberson Lecture during ATS 2009. We attended the lecture, although I must make a confession. I was struggling to stay awake. It had NOTHING to do with the subject or the presenter. It had much more to do with being on the road for nearly three weeks and just running out of steam. I get so frustrated when I miss information in a talk like this. What if I miss something that could be relevant for us? Thankfully Donna was alert and chipper - Carmen had to leave part way though and I think Ashley was feeling as tired as I was. This photo is from the ATS press room.

This photo is from the official show photographer from the American Thoracic Society. Editor-in-chief of The New England Journal of Medicine Jeffrey Drazen delivered the 2009 President’s Lecture on Tuesday. He spoke about the challenge of the information age, deciding whose information you can trust.

After Chicago our little outreach team went on to San Diego for the International American Thoracic Society Annual Meeting. This year there were more than 14,000 lung doctors and researchers at the event. It was a good year for Hermansky-Pudlak Syndrome as we had several high profile exposures during the course of the week. I"m not gonig to blog about them all in order because my notes are everywhere and I really want to get them blogged about before they are no longer fresh in my mind. It was a great, great trip for us. Hermansky-Pudlak Syndrome is definately on the map of the American Thoracic Soceity. Imagine that only five or six years ago Donna and Marie attended the show for the first time knowing no one. We couldn't even afford a booth that trip, so these two HPS moms sat in chairs next to a poster about HPS trying to get someone's attention. I think it worked.

Here's Carmen and I posing for a pic with a reporter from La Raza, a Spanish-language newspaper in Chicago. They are planning an upcoming story on Hermansky-Pudlak Syndrome. I'm very hopeful it will help us find more people affected by HPS. I've got to say, this was not one of my stellar wardrobe moments of the trip. I was running out of clean clothes! Thank God for Ariel and his family that let us do laundry that night! I was getting desperate!

This is another clinic right across the street from the church that was so helpful to us. We stopped by briefly and left brochures with the clinic's Director of Medicine. I'm hoping we can stop in again when we're back in Chicago.

Here's Carmen working hard late at night following up with people we'd met during the day. The work doesn't end just because it's night time when we're on an outreach trip.