Markello honored as Doctor of the Year

Dr. Thomas Markello, one of the researchers working on Hermansky-Pudlak Syndrome in Dr. William Gahl’s lab at the National Institutes of Health, was honored by the Hermansky-Pudlak Syndrome Network as this year’s Doctor of the Year.

Dr. Markello is the primary investigator for the multidrug trial to treat the advanced pulmonary fibrosis of Hermansky-Pudlak Syndrome. He’s also been involved with various other aspects of HPS research.

Dr. Markello has always been willing to give freely of his time outside of the lab to help the HPS community. He’s made a number of outreach trips with the HPS Network to places such as Florida and Puerto Rico to help HPS patients and to help build awareness of the syndrome in the medical community.

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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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