HPS Awareness Night - come enjoy some hockey!

Donna passed along the following message for anyone in the area that might want to participate. I can't attach the flyer here, but the tickets to the hockey game are $10 each - if you want some I'll put you in touch with the family organizing this event.

From Donna:
Dear HPSers and Family and Friends,

A wonderful family in Mass. has arranged for an exciting night for HPS. The Falcons Hockey Team will be playing two games and hosting an HPS Awareness Night. An local team (the dad of our little HPSer!!) will be playing a game before the Falcon's game. They will be wearing Jersey's that have our Logo on them!!!!! Pl ease consider coming out and cheering them on. Bring friends and family and lets make a night of it!! The local hotel, Sheraton Springfield, has put aside rooms for the HPS Network for $95.00/night. The number is 413.781.1010 or 800.426.9004. For tickets for the game please see the attached flyer. Lets support this family and their efforts on ourbehalf. Any questions do not hesitate to call the HPS Network at 800.789.9477. Ifyou can't make this one then consider the game in April.Thanks

Donna Appell

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