Skip to main content

Donna and Ashley charm the crowd and make front page news


Donna Appell, R.N., chair of ATS PAR, and her daughter, Ashley, accepted the ATS Research Program’s first-ever Breathing for Life Award on behalf of ATS PARs 15 member organizations.
Although both Carmen and I got shots of this, I think the official photo is sharper than ours.
This was one of the big moments of the show for Hermansky-Pudlak Syndrome. Donna has served as the President of PAR, the public arm of the ATS, for the past two years. PAR, as an organization under her leadership, received the first ever Breathing for Life award. In Donna's typical fashion, her personality charmed the crowd. She and Ashley had written a poem about lung disease researchers that Ashley read at the podium of this huge, important dinner with more than 600 attendees. Everyone was completely charmed. The rest of the show people were stopping Ashley to meet "the girl they heard about that read the poem at the research dinner." This photo made the front page of the show daily.
But, Donna and Ashley weren't finished charming the pants off everyone in the room. ATS premiered the ATS Research Foundation film - a film to help raise money for lung disease research. Not only did Hermansky-Pudlak Syndrome get four mentions in the film (I was counting), but Ashley was filmed singing as her mom talked about how when Ashley sings, her mom thinks about her lungs and how much needs to be done so that Ashley can keep singing. The funny thing, according to Ashley, was that she wasn't singing seriously. She was just messing around while she was waiting on the camera guy, and he caught it on film.
Well, serious or not, it had the room in tears.
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