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.


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

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.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect