Skip to main content

Hermansky-Pudlak Syndrome Network exhibits at the American Thoracic Society International Conference

Candice and Crystal Sipe, and HPS Network Vice President Heather Kirkwood, attended the American Thoracic Society’s International Conference in Denver, Co. May 13 – 18 to help create greater awareness of HPS among lung doctors and researchers.


The trio manned a booth on the exhibit floor during the meeting and spoke to several hundred doctors and researchers from all over the world about HPS.


“I was amazed at how many doctors there were from so many different countries,” said Candice Sipe.


“We were particularly interested in speaking to the doctors from India,” added Candice Sipe, “They seemed interested in us since we were adopted from India.”


The trio also attended a patient event, called Breathing Better, the day before the international conference opened. At the patient event, Dr. Gochuico addressed a group of pulmonary fibrosis patients and explained to them why HPS research is important to the greater pulmonary fibrosis community. After she spoke, Kirkwood made an appeal to the pulmonary fibrosis community to keep an eye out for anyone who might have HPS.


The rest of the afternoon was spent learning about issues of interest to anyone affected by lung disease.


Kirkwood attended the ATS Foundation dinner and accepted a plaque on behalf of the HPS Network commemorating the research partnership between the organizations.


“The research grant is something everyone in the HPS Network can be proud of,” said Kirkwood, “It’s all of our members who are out there raising money that make it possible. Without their fundraising, we wouldn’t be able to take advantage of opportunities like this.”


Dr. Lisa Young, a former winner of the HPS Network/ATS Foundation grant, gave a presentation about HPS to pulmonary fibrosis researchers and also presented a poster about the mouse models used to study HPS.


Dr. Susan Guttentag was also at the meeting. She and her lab published a paper on their HPS research in the May issue of the American Thoracic Society’s journal, American Journal of Respiratory and Critical Care Medicine.


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