Eating in the hospitality suite

One of the tricky parts of the HPS Family Conference is getting everyone fed, and fed as cheaply as possible to keep the price of the conference down. One of the ways we do this is to bring food in from the outside and try to feed everyone in the hospitality suite. That means eating in shifts to some extent to get 220 people through a meal, and do it in under an hour! (Photo from the Tillmans)

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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.

The blog is back, I hope

What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I...

Living on the frontlines

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