New Yahoo! Group launched for families affected by Chediak-Higashi Syndrome

A new Yahoo group has been launched for families impacted by Chediak-Higashi Syndrome, a rare type of albinism that involves a bleeding disorder, immune system deficiencies and often progressive neurological deficits. The group is intended to help families impacted by CHS get to know one another, offer each other support and begin to advocate as a group for issues of common interest.

For now, the group will be moderated by Heather Kirkwood, Vice President of the Hermansky-Pudlak Syndrome Network. Although CHS is very rare, improved diagnostics and genetic testing is increasing the number of families diagnosed with this type of albinism. Research is also moving forward and identifying different types of CHS, some more severe than others. It is the HPS Network’s hope that by improving communication among these families, all will be better able to take advantage of scientific advances as they occur.

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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

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Some good news about Pirfenidone

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Living on the frontlines

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