Skip to main content

Lyra makes the news!

Below is a news story about Lyra, one of my local little buddies with albinism who made her local paper. If you click through to the newspaper's story, there's a darling pic of Lyra!

A face in the crowd
Family fights myths associated with albinism


Lyra Thompson, 3, of Edwardsville, was born with albinism, a genetic condition that causes a lack of pigment in the skin, hair and eyes. Lyra’s family is hoping to dispel myths about albinism and help Lyra live a happy, self-confident life.

By Nicole Kelley
August 6, 2009

The routine is simple. Before Lyra Thompson can leave her house, sunscreen must be applied and sunglasses, and a hat must be in place.

She’s 3-years-old now, and the routine has been instilled in her from an early age. But it’s not an overprotective mother or the fear of skin cancer that has Lyra being so careful.

Lyra is a child with albinism, a genetic condition that affects the amount of pigment in her skin, hair and eyes. Her lack of pigment has given her white, almost clear hair, fair skin that could burn easily and blue eyes that are more sensitive to light than others.

To read the full story go to: http://www.bonnersprings.com/news/2009/aug/06/face-crowd/

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