Skip to main content

It’s almost time!

Only a few days left until we’re off to New York for the Hermansky-Pudlak Syndrome Family Conference! There’s a part of me that is very excited, looking forward to seeing all my HPS friends and to hearing all the latest in the research. Then, there’s a part of me thinking about all the details, the board meeting, the nuts and bolts of making something like this run – and I can hardly wait for it to be over. I can’t imagine how Donna and the Oyster Bay team must feel.

Last year I went on Wednesday and stayed at Donna’s house to help get things ready. We stayed up until about 2:00 am before Richard, Donna’s husband, came downstairs and “made” us go to bed. We were up at six the next morning finishing photocopying, putting together packets etc. The Appell house was a hive of activity with volunteers coming and going, things being loaded into trucks to take to the hotel – and all the while we’re trying to remember what’s still there and what has gone and what we’ve forgotten.

I offered to go early again this year, but Donna said she’d rather save one of my vacation days for working on the film project, or going to a medical meeting or something like that. Now that it’s deadline time at work, I’m thankful I didn’t go on Wednesday. Things aren’t going well at work as my feature is STRESSING ME OUT!

It’s funny how the easiest stories can turn out to be the biggest pain in the you-know-what.

So, after working on board meeting stuff all this evening, I’m off to bed. I want to try to be at work by seven.

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.

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I...