Skip to main content

Angels in Voice sing at HPS Conference; release new CD

Many of us in the HPS community are big fans of Angels in Voice, the singing duet of Candice and Crystal Sipe. Candice and Crystal are a real part of HPS history. In the beginning, before there were research protocols underway at the NIH, Donna and Ashley traveled to the NIH every two months for two years. The doctors studied Ashley to determine if HPS was a disorder they could learn enough from to make a difference, and to make it worth spending millions on research.

At the end of those two years Dr. Gahl decided that HPS was a great disease to study because it could teach medicine so much about albinism, vision problems, bleeding problems, digestive problems and lung problems. The NIH could get a lot of bang for its buck by studying HPS.

And so before the natural history study was launched, HPS was featured at NIH Grand Rounds. Donna asked if we could have a few minutes before the scientific session got underway. They allowed it, and Candice and Crystal sang the song I’ll post in a video clip above this entry. It made a real impression and since then HPS has been nicknamed the singing disease. Grin.

Right after they got home from conference, Candice and Crystal found that the copies of their new CD are ready!!! So, the CD is out! I think it’s the best one they’ve done so far. I especially like the song Jerusalem and the girls singing the Lord’s Prayer. It’s wonderful! So, if you’d like your own copy visit www.angelsinvoice.com and get in touch to order a copy!

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