Skip to main content

Another prayer request

I spent quite a while on the phone tonight with my HPS friend Karen (regulars will remember her appearance on the blog before.) Karen has a prayer request that I wanted to share with the HPS community. Her friend, also named Karen (we’ll call her Karen II for clarity as I don’t want to use her last name online without permission) is in the ICU right now with a staph (sp?) infection from a recent surgery. Her condition is very grave and it’s unclear as to whether she’ll pull through.

Last year Karen II raised more than $1,000 for the HPS Network as part of HPS Karen’s fundraiser in Greensboro. Every year Karen organizes a group of Hermansky-Pudlak Syndrome walkers as part of The Human Race – an event organized by the volunteer center in Greensboro.

This has special meaning because Karen II has a number of health problems of her own. She was a miracle baby, born very early, and has had life-long medical issues as a result. She’s been through many surgeries and illnesses – but she cared enough about us to raise money for our cause.

If there’s any HPS’er out there who would like to send Karen II a Get Well card to let her know the HPS community is thinking of her, e-mail me at:
hkdawn@yahoo.com and I’ll give you her hospital address.

I’m always so grateful to those who help to keep the HPS Network going, but I’m also deeply touched by those who don’t have family affected and still reach out to help us in our journey to the cure.

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.

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