Look for the HPS’ers at the Puerto Rican Day Parade!

This evening I’ve been working on designing a handbill for the HPS’ers that will be marching in the Puerto Rican Day Parade in New York City. I’m anxious to find out if this outreach effort yields any results – I can only imagine that it would.

Hermansky-Pudlak Syndrome is the most common genetic disorder in Puerto Rico, affecting 1 out of every 1,800 Puerto Ricans. So, I can’t help but think that if we can gain a little exposure there, we’ll find some new people, either in New York or perhaps relatives of New Yorkers on the island.

They’ve ordered T-shirts for the occasion and I think I’ve managed to get in on the act at least to get a T-shirt. They’re going to be red, and I think they’re going to say on the back “HPS Fighting for the cure with every last breath.”

I’m also excited because my friends Carmen and Elsie have made some headway on outreaching to the local media in their areas.

I still feel the pressure of the clock, however.

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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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