Hope in Puerto Rico

It looks like the crisis in Puerto Rico could be over – maybe. Yesterday a special commission, agreed upon by both sides, met to hash out a compromise to the stalemate that has pretty much shut down the Puerto Rican government (and our protocol recruitment trip.)

They apparently reached an agreement – although the exact details of what they agreed to seem to be lacking in most of the coverage I’ve read. The dispute was partly about a sales tax, but I don’t see anything about a sales tax agreement.

As I’ve said before, I’m four generations removed from my Puerto Rican roots so I’m not exactly up on Puerto Rican politics, but that glaring omission has me holding off on my jumping up and down for joy. I guess the several thousand demonstrators today in San Juan agreed with me. They seem skeptical too.

But, it’s progress – and it’s hope. I only pray they work it out soon so our friends on the island can return to their normal lives, and so we can get on with the business of filling this drug trial with patients! Honest to God, it’s keeping me up at night!

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Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

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.

Some good news about Pirfenidone

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Living on the frontlines

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