The GI Protocol is open!

First, let me apologize for the quick and dirty post. (See last entry – grin!) I really want to blog at length about this, but I’m under some big bad deadline pressure right now. It will have to wait until the weekend.

But, I do want to get the word out that the GI protocol is open. This is exciting news as it’s the first treatment protocol at NIH devoted to the bowel issues of Hermansky-Pudlak Syndrome.

The tough part about it, however, is that they are only accepting 10 patients and those 10 patients have to meet a pretty long list of requirements, plus not have any of the long list of exclusionary criteria. That means that not everyone I’d like to see get into this protocol is going to be able to do it.

If you do have bowel issues related to HPS, and you are interested in going to NIH for treatment, please contact the HPS Network and check it out. It can’t hurt to find out if you’d meet the criteria, and even if you don’t, it’s helpful for us to know you’re out there, you’re having issues etc. This protocol, like the lung protocols, is only the beginning. We need your information to keep pushing the research forward.

Comments

Kathryn said…

I look forward to hearing more about this...

9:10 PM

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...

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...

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.

Living on the frontlines

Search This Blog