Way to go DelVecchios!

I just wanted to post a quick shout out to the DelVecchio clan. They held their annual HPS garage sale this weekend and raised more than $780 for the HPS Network - most of it in 25-to-50 cent sales!

I've got to hand it to the DelVecchio family. Not only do they organize this garage sale, but they take items for sale from neighbors and friends all year - and all that, ummm....I think the polite word is stuff......has to be stored somewhere.

Their garage and attic and every nook and cranny Marie can find is loaded down by the time the sale rolls around.

I wish I lived closer. I've got some garage sale items, but it's hard to have a garage sale when you live in an apartment and don't even have a parking shed, let alone a garage. Grin!

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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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