Skip to main content

Congrads Puerto Rico!

Pictured above: Adam, a very cute baby, and Dr. Carmello Camona-Rivera from the NIH.

Congrads Puerto Rico!

I haven’t posted yet about the HPS Puerto Rico conference. I wasn’t there personally, and so I’ve been holding back waiting for more details. But, Dr. Carmelo Camona-Rivera, one of the researchers in Dr. Gahl’s lab, shared photos with us.

I’m giving the folks in Puerto Rico a little time to recover from the conference. I know when you’ve put on a conference, it drains you and you need a chance to catch up with your regular life.

The conference was a huge success! We enrolled 45 new HPS’ers on the patient registry – perhaps the most at one time ever. In addition, there were 73 HPS’ers in attendance that had been to one of our events before – and of course everyone’s family.

There was also a separate session for medical professionals and 45 attended.

The week also brought many outreach opportunities speaking at various clinics and hospitals. HPS also got a lot of coverage in the Puerto Rican media. Those are some of the details I’ll have to post later, along with more photos I hope – wink wink.

A big hat’s off to Richie, Ivette, Yeidyly, Manuel, Herman and Hilda who went early and scouted out places where we could do outreach. You all did such a fantastic job to make this event a success.
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

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

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