Skip to main content

In memory of Rene



This past weekend the HPS community lost a longtime friend, Rene. Rene lived in Puerto Rico and was known to his friends there for being a good husband and friend to his fellow HPS’ers. They are all remembering his wonderful sense of humor and his kindness.

Letty, an HPS’er in New York, says she remembers most about him that even though he knew the odds of his being able to one day get a lung transplant and beat the pulmonary fibrosis of HPS were slim, he always cheered her up and made her laugh. She remembers he was always positive and always kept up the fight against HPS to the very end.

Donna Appell says she’s grateful that the last time she saw him at the NIH she was able to give him a big hug. She says he was a kind man who was always supportive of the HPS Network and his HPS friends.

I met Rene only once at the NIH. We had a considerable language barrier, but we were able to talk for a while as Hilda translated for us. He was a very nice man and we took a bunch of photos together. I can’t put my fingers on them now.

I wanted to post this news because it’s important to remember our fellow HPS’ers. I’ll always be grateful to people like Rene who were able and also willing to participate in the research to leave behind a chance at a better life for all of us.

Rest in peace Rene. You will always be much loved and much missed.

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