Friday, June 14, 2013

HPS Network attends the American Thoracic Society meeting

Recently the Hermansky-Pudlak Sydrome Network attended the international meeting of the American Thoracic Society. It is one of the biggest medical events we attend all year. There were approximately 14,000 lung doctors and researchers gathered together in one place. If you want to read more about the meeting, I suggest visiting We will be posting the news stories there.

But here is the place for me to share a few personal reflections.

Even though the vast majority of the attendees are not working on Hermansky-Pudlak Syndrome, it was still very comforting to me to see so much research being done on lungs. There’s a saying, the rising tide raises all boats. Better understanding of the lungs, and lots of different lung diseases, could someday yield a clue, or a technique, that might benefit patients with HPS. For example, I know that some of the Cystic Fibrosis researchers are working on a way to deliver gene therapy to the lungs. While our therapy might be different, our doctors might be able to use the same delivery system.

We were very excited to have several doctors from Puerto Rico drop by the booth. We hope to stay in touch with them.
And, of course, we were thrilled to see our own researchers and doctors come by. This year I wasn’t able to make it to the poster sessions. I know there were some on HPS. I’m sad I didn’t get to see them or take pictures.. But, one can’t be everywhere.

We also tried something new this year. We held an HPS Doctor’s Dinner. It was a great investment. It fosters friendship and collaboration among those doctors and researchers interested in HPS. I think it is something, funding allowing, we will continue to do.

Perhaps best of all we had a record crowd. The Nieves and Rodriguez families (minus the kids) both came to the Breathing Better event and helped us set up the booth in the exhibit hall. The Nieves came back the next day to help us at the booth. The rest of the HPS team were Angie, Carmen and me in one hotel room, and Ashley and Donna in the other room.

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