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 www.hpsnetwork.org. 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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