Skip to main content

Meeting of the Minds

One of the very exciting things that happened at this year’s HPS Conference was the Meeting of the Minds. You can read the news story about it here. This, however, is my take on it. 

The Meeting of the Minds was the first ever formally organized meeting for HPS researchers held at the HPS Conference. There is some HPS history behind this. For many years researchers have met amongst themselves on Saturday afternoon while we all enjoy sessions. We’ve provided them with a room and a lunch, but it was informal. 

In the past we’ve offered to organize even an HPS researcher conference in conjunction with the Network conference. If it could be useful, why not? We would benefit from the economies of scale on room rates and meeting room rates. Many of our researchers are already devoting their weekend to the cause because they are coming to speak to us. We’ve already paid for their travel. Until now, they’ve preferred the informal setting. Last year, however, they asked if they could make it a more formalized event. 

So, we stepped it up a notch. We invited Dr. Kotton (you can read about him in the news story) to come and talk to the HPS researchers about the latest developments in stem cell research. They think they may be able to use stem cells taken from HPS blood to make a certain type of lung cell much needed for research. This would be a huge breakthrough for us. Other lung diseases are able to get tissue from lung biopsies for research, but because HPSers bleed so easily, this is not an option for us. Lung tissue can only come from explanted lungs or from the lungs of HPSers who have died. Even if the patient is willing, it can be really hard to get the sample the way the researchers need it. 

The meeting was a success. Techniques were discussed and plans for continued collaboration on some project throughout the year were made. In fact, the researchers have asked us to EXPAND the meeting! Happy to do it! 

It means, however, that this year we’ve got to raise even more money for conference to cover the expanded doctor meeting. What do you think HPS community? Up to the challenge to make headway on the cure? 

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...

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.