Put it on your calendar now! Our HPS parent call the first week of December will be about "Higher Bowel Awareness: Coping with the Crohn's of Hermansky-Pudlak Syndrome." This will not be a session with medical professionals. Rather, we'll have a panel of HPS'ers living with bowel disease to answer questions from HPS parents, supporters, spouses, partners or friends. This is NOT a call for those with HPS. It's a chance for our supporters to ask questions they might not want to ask in front of us. What have you ever wanted to know about living with bowel disease or about living with an ostomy? All questions are fair game for our panel of poopologists. The English language call will be 8:30 eastern time on Tuesday Dec. 6th and the Spanish language call will be at 7:30 eastern time on Wednesday Dec. 7th. Information about how to call in will follow.
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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I may be interested in helping with this phone conference since I've had much experience with the bowel part of HPS.