Building the exhibit hall

When you attend a large trade show like this, it's always amazing to see how quickly they build the exhibit hall. Today Ashley, Karen and I put together the HPS booth while Donna attended a meeting. I took a few photos of the hall pre-show from our booth. Wait until you see them from the actual show!

Building the booth was hard work, mostly because typically trade show organizers don't pay to cool the large hall while the workers are building it. They save the cost of cooling for the attendees. The thing is here in New Orleans it was 87 degrees today and extremely humid, and that was outside. The air wasn't moving and the sweat was just dripping off of me. I felt like I needed another shower before I even got to the first meeting. Karen and I both had to sit down a time or two because we were getting light headed - but we got the job done and got out of the hall without being run over by a fork-lift or a crane. It was a small victory.

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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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