Skip to main content

Getting in the Christmas spirit Hermansky-Pudlak Syndrome style

Let me tell you a little Christmas story. Several years ago there was a musical group on Long Island in New York called Three’s Harmony. (Today they are known as “J”). Somehow (I don’t know the whole back story) they became interested in Hermansky-Pudlak Syndrome. It wasn’t because they had an affected family member. It was because somehow they became aware of us, and they cared.

The group began holding annual Christmas benefit concerts for the HPS Network at Ashley’s high school. Every year the concerts grew (as did the Network). Last year I think the event generated about $10,000 for the HPS Network, one of our largest fundraisers of the year.

Last year the group “J” did something even more amazing for us. They gave us a CD. The CD is roughly half covers of traditional Christmas favorites, and half original compositions. Not only did “J” donate their time and talent, but 100 percent of the revenue from the sale of these Christmas CDs, titled “Another Christmas” goes to the HPS Network. And, perhaps even more generous, the group gave the HPS Network the copyright to their original Christmas tunes – so should our little Christmas CD ever get airplay on the radio or start to catch on, the HPS Network will receive the royalties for the original pieces of music.

What a special Christmas gift for all of us with the Hermansky-Pudlak Syndrome type of albinism.

If you’d like to purchase a copy of “Another Christmas” from the HPS Network, the cost is $20.

Contact the HPS Network at:
ADDRESS
Hermansky-Pudlak Syndrome Network Inc.
One South Road Oyster Bay, New York 11771-1905
PHONE: (516) 922-3440
TOLL FREE: 1(800) 789-9HPS
FAX: (516) 922-4022
E-MAIL: hpsnet@worldnet.att.net
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

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

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’m h
Post a Comment
Read more