Skip to main content

Hundred People Search

It is that time of year again - the time of year when the Hundred People Search (H.P.S) starts over again. We are kicking off the year with two new members on the HPS patient registry. That means we only have 98 to go by next year's conference! It's a big task, and honestly, we've never hit 100. Perhaps this is the year that can change that.

What is the Hundred People Search? It is an outreach challenge to the community of those impacted by Hermansky-Pudlak Syndrome or HPS. We dream of a year when there is no one to find, but sadly, that just isn't in the cards. Together, as a community, we dream of better treatments, and someday, a cure - but that can't happen unless the HPS community comes together. We have to find one another, all over the world and not just in the United States, to show researchers we are here, we are willing and we need a cure!

We are limited by being rare, and by not having millions to spend. So, it is up to us and our supporters! Many are involved in the albinism community and many others are involved in the Puerto Rican community (most affected by HPS). They are best placed for grass roots outreach to find others with HPS.

It is up to everyone whether they want to be more deeply involved in the community, or just sign up so that they can learn about research, meet others in the same shoes and join in to help us in the journey to find a cure. Everyone copes differently. It is vital for all of us, however, that we find those impacted by HPS around the world so that someday, we can find better treatments, and a cure, for all of us.

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