It takes a village

Some of the crowd at the fundraiser Homers Coffeehouse held for me.

I want to once again thank all of the people who have pitched in to help make my upcoming move to Virginia possible so that I might try for a lung transplant. I might not be a child, but it truly takes a village to make lung transplants happen. That’s why transplant centers evaluate your support system as part of the decision to list you for a lung. They want to know if you will have the physical, financial and emotional support to help deal with the roller coaster process of getting, and then maintaining, transplanted lungs. Not only have the fundraiser and the donations helped financially, but they will help demonstrate to the transplant team that I do have a LOT of people out there rooting for me. So, here’s a big THANK YOU again!

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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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