Wednesday Prayer Requests from HPSland

Here is a list of concerns and celebrations for this week.

Cesily - that she is able to find a way to access the treatment she wants and that she has peace

Kathryn - is celebrating getting out of the hospital. Please pray that she continues to recover well.

Yary - is in the hospital in Puerto Rico. Please pray for a speedy recovery.

Dave, Nancy's husband - celebrate that he is doing so well, and pray that he continues to heal well.

Chris - that his upcoming trip to NIH goes smoothly and is productive

Maria G - that she has peace as she battles her pulmonary fibrosis.

Maria M - that she makes headway with being listed for a lung and kidney transplant

Carmen M - that she continues to heal and is finally released from the hospital

Please pray for all the unspoken needs that can't be shared

Please pray that the OysterFest is successful this weekend. It's a big fundraiser for us, and last year it was rained out a day and we barely broke even. We really do need the boost!

Please pray that the New England team has a successful weekend as they have an HPS booth at a health fair.

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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

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Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect

Living on the frontlines

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