Skip to main content

If you're in Nashville

Although this isn't an HPS fundraiser, this is an announcement about a fundraiser for our friends at the Coalition for Pulmonary Fibrosis. The funds will help overall pulmonary fibrosis research. I'm posting it for that reason, but also because I want to give a big kudoss to the country stars who are helping out.

Although just as many people die yearly from pulmonary fibrosis as from breast cancer, somehow pulmonary fibrosis doesn't get anywhere near the support from corporations or celebrities.

I don't begrudge folks fighting breast cancer anything. They've had huge successes and I think that's great. Hats off!!!

But, some days, it really gets to me that pulmonary fibrosis doesn't get more attention.

I have several theories about why.

First, I think it's because most people impacted by pulmonary fibrosis are older. Second, I think we've done such a good job of educating the public about the evils of smoking that the average person assumes if you have lung disease, you did it to yourself.

I've had HPS'ers on oxygen tell me that they've overheard comments about them as people made some snide remark about smoking. In both cases where I've heard this story, the person had actually never smoked - as if it would be any less rude if they had.

At any rate, I'm here to say lung disease, and more specificly pulmonary fibrosis, doesn't just happen to the elderly. I'm 35 and fighting pulmonary fibrosis. And it doesn't just happen to smokers. I've never even tried smoking.

It's a disease, just like cancer. We need a cure just as much.

At any rate, I'm putting away the soap box. Here's the announcement. Kudos to the stars that are helping out.


James Marsden Hosting Tribute Concert to Songwriter Dennis Linde
February 6, 2009
Actor James Marsden (X Men, Enchanted) will host a tribute to the late songwriter Dennis Linde on Monday (Feb. 9) at the Musicians Hall of Fame in Nashville. Marsden is married to Linde's daughter, Lisa Linde. Performers include
Montgomery Gentry, Joe Nichols, Mark Chesnutt, Eddy Raven and indie rocker Ben Lee, along with surprise guests. Linde's writing credits include Elvis Presley's "Burnin' Love," the Dixie Chicks' "Goodbye Earl" and Garth Brooks' "Callin' Baton Rouge," among many others. Proceeds from ticket sales will benefit the Coalition for Pulmonary Fibrosis. A member of the Nashville Songwriter's Hall of Fame, Linde died from idiopathic pulmonary fibrosis in 2006.

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...

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...

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.