Grandpa would be proud

This evening I went to a fundraiser dinner for the local chapter of the Lions Club. Yep, I go to a lot of fundraisers, and they aren’t all just for HPS – grin. This one was your standard spaghetti dinner fundraiser. You paid $5.00 at the door, got a plate of spaghetti, a piece of bread and a salad and then went and found your place in the church’s common hall to eat. Desserts cost extra.

There was also a silent auction and I went home happy as a clam with gift certificates from MiRachito, my favorite local Mexican restaurant.

As I looked around at all those gold and purple vests though, I couldn’t help but think of my grandpa. He was a Lion for years and years and years. The Lions Clubs help to raise money for charities that relate to helping the visually impaired or preventing blindness.

I can remember in college thinking it was so cheesy that my grandpa wanted me to come and speak to his Lions Club. I couldn’t imagine what the average college freshman could possibly have to say that would be so riveting.

But on May 10th I am going to be the featured speaker talking about the work of the HPS Network. Somehow I feel like grandpa is smiling down from heaven.

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