Scientific advisory board at work

We are so blessed to have such a great team of doctors and researchers working on HPS. Here they are meeting with one another at the HPS conference. It's a great informal setting to share ideas about the latest research and where research should be headed next.

We are so blessed that our researchers so openly share their work with us at conference during their presentations. I don't post much about the specific scientific presentations because much of what they discuss with us isn't yet published. After all their work, I'd really hate for them not to get the credit necessary in the scientific community that would allow them to keep going.

I will say that some interesting discoveries were made this year about the lung disease - while we haven't completely cracked the puzzle, it sounded to me like they were narrowing in on it.

I left the meeting extremely hopeful. I was also very pleased with the robustness of the conversation among the docs.

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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...

Some good news about Pirfenidone

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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.

Living on the frontlines

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