I grew up around the military. I think of West Point as being, well, you know, West Point. But, this evening Donna and another HPS mom, Marie DelVecchio, are on their way to West Point, New York for a joint meeting of the New York chapters of the American Thoracic Society and the American Lung Association.
Donna has managed to get a table right outside the meeting room doors to set up our little display, pass out literature about HPS to doctors, and hopefully talk to some of them about the drug trial.
The event sort of came together at the last minute. When Donna called to inquire about the possibility, no one knew how to answer the question. Could a patient group have a table? Would they have to charge? But, the details were hammered out and now Donna and Marie, at this very minute, should just about be to West Point.
Tonight they’re having dessert at Dr. Seward’s house. And, at o’dark thirty they’ll be bright eyed and bushy-tailed, smiling like a couple of perfume spritz girls at a department store. “Do you know about Hermansky-Pudlak Syndrome?” - I can hear it now. Grin! Fact is, I wish I was there in all my blonde albino glory!
I’m very hopeful about the excursion because New York City (and New York State) have the largest Puerto Rican population outside of the island its self. I’m positive many of the doctors they’ll see tomorrow have HPS patients – and many of them might not realize it.
It’s a stretch given that the conference is next week!
Donna has managed to get a table right outside the meeting room doors to set up our little display, pass out literature about HPS to doctors, and hopefully talk to some of them about the drug trial.
The event sort of came together at the last minute. When Donna called to inquire about the possibility, no one knew how to answer the question. Could a patient group have a table? Would they have to charge? But, the details were hammered out and now Donna and Marie, at this very minute, should just about be to West Point.
Tonight they’re having dessert at Dr. Seward’s house. And, at o’dark thirty they’ll be bright eyed and bushy-tailed, smiling like a couple of perfume spritz girls at a department store. “Do you know about Hermansky-Pudlak Syndrome?” - I can hear it now. Grin! Fact is, I wish I was there in all my blonde albino glory!
I’m very hopeful about the excursion because New York City (and New York State) have the largest Puerto Rican population outside of the island its self. I’m positive many of the doctors they’ll see tomorrow have HPS patients – and many of them might not realize it.
It’s a stretch given that the conference is next week!
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