View from the balcony at the PAR dinner

Nearby the convention center in San Diego and within walking distance of the Marriott and the Hyatt, is a little shopping area next to the water. It's a tourist trap, but it's cute and the balcony at the PAR dinner had a nice view of it.

We only had one night in San Diego when we didn't have to be at a function. Donna, as a member of the Board of Directors of the ATS, was invited and went on a cruise around the harbor. The number of people who could go on the boat was limited, however. By that time, the rest of us were so tired that while we would have gladly gone on a cruise, we were just as happy to stay behind at the hotel. Ashley, Richie, Carmen and I went to dinner at the shops seen here, and then we just poked around the little stores. Carmen bought a few things for her family.

And, then, we saw it. The perfect little San Diego memory for Donna - it was a little hanging sign that said, "I don't suffer from stress. I'm just a carrier." We laughed so hard, and Donna laughed so hard when I gave it to her the next morning. Only those of us who live our lives in genetics-related stuff would find that so funny!

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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

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria

Living on the frontlines

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