Skip to main content

HPS'ers in NYC

 Heather (me), Jackie, Mike and Yeidyly in New York City. Jackie is such a gift to the HPS Network. She organizes all of our food for the event, and she plays tour guide in the city when a group of us are there. Next to her is Mike from the UK, and Yeidyly, an HPS'er from Puerto Rico who is a dear friend. Not only is Yeidyly an HPS'er, but she's researching HPS as well. 
I got caught! It's a weight watchers vacation! Yes, yes, I know. I've taken a lot of grief about this pic. Yes, I'm working on losing weight, and I am making slow progress. I did, however, take a little diet vacation in NYC. It's just hard to stay on the wagon when you're not only travelling, but having a good time with friends you never get to see! 
 HPS ladies in Central Park! 
 Carmen and Mike at the taping of "the Chew." Some of the HPS'ers got up early to go and be at the filming of this popular food show. I didn't go. My tummy was acting up. I was also just sooo tired. When you go to a taping of a TV show, you can't get up in the middle of filming to go to the bathroom. I wanted to be sure lurch was behaving before I got locked in anywhere without access to a restroom! 
Izzy and Nancy! 


These are some photos from our HPS adventures in NYC. I always like to give credit to the photographer, but honestly, as these pics have made their way around facebook,. it's been hard to tell who they belong to. Thanks to all the HPS'ers sharing photos though! 

Comments

Popular posts from this blog

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...

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...

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.