10th Successful HPS Lung Transplant

I was overjoyed to read yesterday about the 10^th HPS lung transplant I am aware of, and even better, it was a success. It was reported in the Deccan Chronicle in India. Of course, when we talk about number of transplants done, we can only report the ones we know about. How easily we might not have known about this one.

Having a registry and staying in touch with the Network to share this sort of information is so important! Every successful HPS transplant will make it easier for all the other HPSers eagerly waiting for their new lungs. I am hoping that somehow, some way, we will be able to track down this patient and talk to him about his life.

I want to know how he does with the new lungs. I want to know if he ever took Pirfenidone since it is available in India. I want him to know there are more than a thousand of us out here who would like to be his personal cheerleaders. You can read the article at: http://www.deccanchronicle.com/130909/news-current-affairs/article/rare-genetic-lung-condition-treated

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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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