Skip to main content

HPS Network attends CHEST

This next week the HPS Network will be undertaking a major outreach initiative in the Philadelphia area. The Network will have a booth on the show floor at CHEST – the meeting of the American College of Chest Physicians, Oct. 25 = 28, 2008. Booth staff will work to answer questions from physicians about Hermansky-Pudlak Syndrome as well as generate awareness among the event’s attendees.

The HPS Network will also be speaking at a number of Philadelphia area social service agencies serving the blind and hospitals to generate greater awareness of HPS among social workers, clients and medical staff that are most likely to encounter patients with HPS.

Anyone who would like to arrange an educational session for their group, or would like to arrange to speak with representatives of the HPS Network in person, should contact the Network’s national office at 1 (800) 789-9HPS. The Network will be in the Philadelphia area again in November for a national genetics conference.

Several researchers from the National Human Genome Research Institute will also be presenting research data on Hermansky-Pudlak Syndrome and pulmonary fibrosis at the CHEST conference.

Comments

Popular posts from this blog

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.

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 blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I...