For the New Yorkers

This is from NOAH. I apologize for the repeat if you read this blog on the NOAH site - but as most of my readers read directly from the blog, and many live in the New York area, I thought I'd pick this up from the NOAH Desk because I thought some of you would be interested. Here ya go!

From the Desk of NOAH
Albinism Documentary, 'Butterfly', showing in NYC

Directed by Yulia Mahr, 'Butterfly" is short documentary about a young Scottish swimmer with albinism called Gemma Sherry.
The film is showing as part of a series of shorts called All Truisms. Tickets and more information about this film are available through the Tribeca website.This film will be showing in competition at the Tribeca Film Festival in New York in the coming weeks.
The screening times are:
April 24th 4pm (AMC Village VII)
April 26th 12.00pm (AMC Village VII)
April 29th 7.30pm (AMC 19th Street East)
May 1st 5pm (Village East Cinemas)
May 4th 1pm (Village East Cinemas)
'Butterfly' was nominated for a BAFTA (Scotland) and received its world premiere at the Edinburgh Film festival. It has gone on to play around the world, and apart from New York can next be seen in North America, at the DOXA Documentary Film Festival in Vancouver.

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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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