Skip to main content

Making headway in Florida!

Last night I talked to Donna to get an update on how the Florida outreach was going. The answer is VERY WELL. Donna said that she felt like if she turned around right then and left that already the week had been worth all the work, and they weren’t even half finished.

When I spoke to her they’d already had four doctor/medical personnel sessions where Kevin and Dr. Markello presented. They averaged about 38 to 40 attendees at each event, except for the one last night that had a turn out of 58!

The group was also interviewed by La Prensa (sp?), the local Spanish language newspaper. An article is supposed to come out Thursday and then another follow-up article the following Thursday. Today they had more medical meetings as well as an interview with the Orlando newspaper. Telemundo was planning to follow them around today as they worked on outreach.

Thursday evening is the big patient event. I can hardly wait to see how that goes and how many people attend.

While it is an HPS-related event, it’s open to anyone with albinism. There will be a low-vision doctor giving a presentation who has more than 50 patients with albinism. And, there’s going to be food! Grin! Debbie has recruited an army of chefs and Elsie has gotten quite a bit of food donated. It will be a great time!
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

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

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