Puerto Rico here I come!

I am very excited. For the first time I’m going to Puerto Rico for the HPS Puerto Rico conference. I’ve always wanted to go, but felt it wasn’t a good use of our money to send me because I don’t speak Spanish. It seemed wiser to send others who could be of more help to the organizers there.

This year we decided to send me after all. I got a good deal on the ticket and it will give me a chance to meet some of the Network in Puerto Rico, something that is really long overdue. It’s so hard to get to know any of them at our conference because I am so busy and distracted.

I am also excited because it’s a chance to glimpse the place my great grandfather came from. Knowing that the HPS gene on my mom’s side came from Puerto Rico makes me feel somehow tied to this place I’ve never been and don’t even speak the language. Perhaps it’s the idea that long ago perhaps there was someone there, related to me, that was just like me. What must their life had been like? They likely never knew they had HPS as it was likely long, long ago.

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Ratner's Cheesecake

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I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Living on the frontlines

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