Skip to main content

Kudos to the HPS fundraisers

With everything going on last weekend, and this week, I didn’t get a chance to say kudos to the folks that were working on HPS fundraisers last weekend.

Last weekend our supporters in Oyster Bay, New York were manning a food booth at the Oysterfest. It’s a fundraiser we’ve done for several years now. I was there (with the rest of the board) the first time we did this fundraiser, and I can assure you it’s two days of solid hard, hard work! A big thank you and kudos to the folks that helped out.

Also, on the very same weekend, the DelVecchio family was having their annual garage sale to benefit HPS. Marie says they didn’t make quite as much money as last year, but they didn’t have as much help this year either. The DelVecchio’s have done this fundraiser for many years now. It’s become something of a neighborhood institution. All year long people drop things off at the DelVecchio house for the annual garage sale. That means that all year the DelVecchios have to store all this stuff! Their attic, garage, etc are full of all this stuff all year. This year they made almost $700. Stop and think for a moment about how much stuff you’d have to sell at a dime to a quarter a piece to make that much money! Thank you DelVecchios for all the hard work and for living with all that stuff all year!

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

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