The following article ran on the ABC News site. I encourage you to click through. The first part is about Rick and his photography, but it also talks about the upcoming NOAH meeting and efforts underway to help the people with albinism in Africa. That's something I'd like to help with if at all possible.
Having HPS makes albinism much more than a matter of vision or appearance for me - but I can't imagine being hunted down like an animal for your body parts. I can't even get my head around it.
I was pleased, however, to at least see a link on the side to the story about HPS that ran on the AP. It would be nice if we got mentioned now and then as a part of the albinism community though and not something "separate." But that's okay. I thought the article was very good.
Fighting the Stigma of Albinism
Stereotypes Prompt a New Push to Empower People Traditionally Known as Albinos
By SUSAN DONALDSON JAMESJuly, 9, 2008
It was at the corner of Park Avenue and 20th Street in New York City that fashion photographer Rick Guidotti first spotted a pale, teenage beauty with snowy hair.
"She had long gorgeous hair and giggled with her friends, and she had zero pigmentation," said Guidotti, who had shot on runways around the world for Revlon, Elle, Marie Claire and St. Laurent.
Despite years of casting and international shoots, by the mid-1990s Guidotti had never worked with a model with albinism.
"I was always told who was beautiful and forced to work within the parameters of beauty -- this model, this season and this face," Guidotti told ABCNEWS.com. "My own ideas of beauty were completely ignored."
Struck by the stranger's unusual but striking features, Guidotti went home and poured through medical journals to learn more about people who've traditionally been called albinos.
"All I kept seeing were pictures of people in underwear, lining against the walls in doctors' offices with black bars across their face," he said. "They were all sad and dreary, images of despair."
Increasingly referred to as "people with albinism," they were once portrayed in circus sideshows as oddities associated with superstition and magical powers.
To read more visit: http://abcnews.go.com/Health/Story?id=5323052&page=1