Skip to main content

Online fundraising update

As you might have noticed from time to time here, I’ve got a variety of little online fundraising projects going on for HPS. They don’t raise thousands, but hey, they’re really easy and every little bit helps. Since many of you are the ones helping with these fundraisers, let me give you an update.

Who ever has been shopping for the Hermansky-Pudlak Syndrome Network at
www.igive.com – thanks!!! We’ve made $6.00 this month, which for this project is pretty good. We’re $4.00 away from getting our next check. So, if anyone has any Christmas, birthday or whatever type of shopping going on, please, by all means – shop for the cure! For those who don’t know about www.igive.com, it’s an online shopping mall of more than 650 merchants ranging from Barnes&Noble and JC Penny, to Office Depot and Eddie Bauer. You can find pretty much anything you need through the site. It does take a little time the first time you shop there, however. Each merchant gives a percentage of what they earn through iGive business to the shopper’s chosen charity. How much they give depends on the merchant, but you can see how much they’ll donate as you shop.

Next, searching for the cure. The HPS Network is part of
www.goodsearch.com (they just sent me a banner and I’ll be adding it here soon.) At this site you can select a charity of your choice, and every time you do a search, that cause gets a penny. I know it doesn’t sound like much, but if we had 100 people doing 2 searches a day, it would add up to $730 a year. Currently we’ve had 599 searches performed on our behalf, so we’ve made $5.99. Someone go make that a nice round number!

Lastly, I plan to donate the revenue generated from the Google ad on this blog to the HPS Network. After I hit $100 I should get a check in about a month, and when I do I’ll send the money to the Network. As of a few minutes ago, the click-throughs on the ad have earned $61.

Every little bit helps!

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.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect