Rare Diseaase Caucus

This information was in the recent e-newsletter from NORD - the National Organization for Rare Disorders. They are joining with others to create a Congressional caucus to promte the issues of those of us affected by rare or neglected diseases. Here's the info for readers who want to know more.

Rare and Neglected Diseases Congressional Caucus

Ask Your Representative to Join Congressional Caucus

With its advocacy partners, NORD has helped establish a Rare and Neglected Diseases Congressional Caucus. When the 112th Congress convenes on January 3, we will begin actively promoting membership in the Caucus. Please help us launch this potentially very important forum by asking your member of the House of Representatives to join the Caucus if he or she has not already done so. View list of members.

Tammy Baldwin

(WI-2)

Joseph Crowley (Co-chair)

(NY-7)

Rush Holt

(NJ-12)

Timothy Johnson

(IL-15)

Peter King

(NY-3)

Gary Peters

(MI-9)

Steven Rothman

(NJ-9)

Mark Schauer

(MI-7)

Fred Upton (Co-chair)

(MI-6)

Lynn Woolsey

(CA-6)

Comments

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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