Today we were able to announce that the HPS Network was honored by an award from the American Thoracic Society. Needless to say, we are over the moon. You can read more about the award here.
To me, as someone with Hermansky-Pudlak Syndrome, the award meant a lot, above and beyond all that it means to the Network. It meant that the community of lung researchers and doctors recognize the unique challenges the HPS community encounters.
I must be careful to not seem ungrateful to all of those who have stepped up to help us over the years. There have been many and too many for me to begin to list here. Still, sometimes I'm surprised who is missing from that list.
HPS is one of, if not the, most common genetic disorder among those of Puerto Rican heritage. Yet, major celebrities and civic organizations have paid us little attention over the years, often focusing on more common disorders such as cancer or diabetes (both worthy causes - don't misunderstand.)
Still, when I think about those few people on this planet who could, with so little time and effort, completely change the course of our research and diagnosis; when I think about our numerous and many attempts over the years to engage them on an issue that is so uniquely Puerto Rican, all without ever even having any sort of response - well, after a while it gets hard not to take it personally.
So, this award was special. If the celebs are ignoring us, at least the ATS community isn't. Perhaps with this feather on our non-profit resume, one day the celebs will notice. We need them too. Our lives are depending on it.