Skip to main content

In memory of Sandra Quinones





The HPS Community has lost yet another treasured member to the Hermansky-Pudlak type of albinism - Sandra Quinones. Sandra lived in Puerto Rico, but relocated to Boston about a year ago to try to get a lung transplant. Sadly, the lung transplant didn’t happen. Sandra was finally listed, but only for a few days before she became too ill.

Sandra had an infectious personality. She was always smiling, always happy and always just bubbling with enthusiasm. She had a beautiful singing voice and a very strong faith in God. She was not only an advocate for HPS, but she was a proud wife and mother of a seven-year-old boy and a 13-year-old girl. Sandra was only just barely 39 years old. 

Sandra generously shared the details of her transplant experience in hopes that others could learn from her. She also generously allowed the NIH to take tissue from her body to help further research on HPS in hopes of one day finding better treatments, and even someday, a cure.
We will all owe her so much, and we will miss her greatly.
For anyone who wishes to attend a service for Sandra, or send her family a card, here’s the information:

In Massachusetts
Vowing at Iglesia de Dios Pentecostal
April 26, 2012 (Thursday)
675 Washington St.
Doorcheter MA
From 7:00 PM to 10:00 PM
For more Information please call Pastora Nancy Cuna at 617-869-8904

In Puerto Rico
Servicios funerarios :
Funeraria De Pedro
19 Alberto RichiePatillas, PR
Sabado 28 de Abril 2012 desde las 10:00 AM
El entierro es el Domingo en el Cementerio Municipal de Arroyo, la hora se anunciara luego
Para mas informacion , pueden llamar a la funerari al 787-839-3720 o 787-380-7347


Si desean enviar tarjetas a la familia/ If you wish to send a card to the family
Ricardo Garcia, Cristal y Lemuel Garcia
22 Emily Jeffer RD
Randolph, MA 02368

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.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria