Host an HPS Christmas Party!!!

The HPS Network hosts an annual Christmas Concert fundraiser in Oyster Bay the first weekend in December. This year families with HPS from around the world can join the holiday fundraising efforts by signing up to host an HPS Christmas Concert event of their own!

A professional broadcast quality DVD of the concert in Oyster Bay will be produced and ready to ship out by Dec. 9th. The DVD can be played at a fundraising event anywhere during the holiday season. If you let the HPS Network know you are planning an event by Nov. 24th, we will put a shout out recognition to your group on the DVD.

In the past HPS families have done things such as:
• Host a Christmas tree decorating party while playing the concert. A basket for donations was simply placed at the front door.
• A children’s hot chocolate party. The DVD was played for the children while they sipped hot chocolate. The kids brought spare change to put in a jar at the event.

Make it easy and simple, or get creative! When your event is complete, simply send the proceeds to the HPS Network office. Call (516) 922 4022 with the name of your event and your location. Give us your address as well so we can ship the DVD to you.

www.hpsnetwork.org

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