Skip to main content

On a mission!

Here's part of the gang (photo courtesy of the Tillmans) looking quite determined! Pictured are Julie, Sheena, her husband Jeff, Karen and Ashley. (Ashley's started using a cane and it seems to be working well for her.) A little conference story....

We were trying to think of something special to honor Donna, her sister Sue who works several days a week in the Network and organizes everyone's travel and a big hunk of the conference, JoTina who regularly volunteers in the office and Kathleen, a retired banker that helps us with our financial stuff. Karen came up with a craft project to make roses out of Hershey kisses. They turned out beautiful! But, it meant there were a lot of people in the Tillman's room working on this secret project.

At one point several of us were heading to the Tillman room. I was walking behind Julie and suddenly there was a thunderous knock and someone sternly saying "Hotel security!" The whole group of us turned and quickly made our way down the hall the opposite direction. I don't know what we think the Tillmans would have been getting in trouble for - but geesh, aren't we a great bunch of friends! HA! And, by the way, the knock was on someone else's door.
Labels:

Comments

Post a Comment

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...
1 comment
Read more

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...
Post a Comment
Read more

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.
Post a Comment
Read more