Skip to main content

HPS Adults Yahoo! group reaches 100 members

The Yahoo! group devoted to adults with HPS (or others with albinism and related syndromes) reached 100 members shortly after the HPS New York Conference. The group will be six years old on July 11, 2010.

The group was founded by Heather Kirkwood, vice president of the HPS Network (before she was the vice president).

“My very first HPS conference meant so much to me. I felt I had to have a way to more easily stay in touch with the HPS community all year,” says Kirkwood, “We started out with 10 members and today we’ve reached 100. Considering how rare HPS is, that’s pretty amazing.” Today the group has three moderators: Heather Kirkwood, Carmen Camacho and Chris Fenlon.

The group gives those with HPS a place to connect with one another. Because the group is limited to those with HPS (with a few exceptions) members feel as though they can share their HPS experiences without worrying about concerning their families or others.

There is also a Yahoo! group for parents of children with HPS and families affected by Chediak-Higashi Syndrome. If you have an interest in any of these groups, e-mail Heather Kirkwood at: hkdawn@yahoo.com. Please put HPS or CHS in the subject line.
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