The weather outside is frightful

This has to be a quick post. I’m at work and I’m on deadlines today. But, for friends and family, (mom just called from Germany worried) yes, I know there’s an ice storm headed for me. I just watched the news on my lunch break and they’re forecasting 1 to 2 inches of ice. They are warning us that we’ll lose power tonight.

I’m going to get the earliest bus I can home from work. I need to go to the bank and the pharmacy on the way home. I’m out of three of my meds and I want to get cash. The last time Kansas City had a huge ice storm I was out of power for 10 days, and none of the ATMs worked. Businesses were open, but were cash only.

Please don’t call my cell phone. I’m trying to keep it charged and it’s having a hard time holding a charge these days. If the power goes out and things get bad, I’ll try to call Ryan and let him know how I am. Remember my home phone goes through the computer, so if the power is out, I won’t have a home phone. Carmen will take care of the HPS adults listserv, but we’re having a hard time with her permissions for the parent list so I’m not sure if she’ll be able to take care of that one – but it’s been pretty quiet anyway.

Hopefully I’ll have power tonight to blog some more.

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

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria

Living on the frontlines

Search This Blog