Archive for October 2007

buy handmade

I Took The Handmade Pledge! BuyHandmade.org

kitchen gadgets on a mission

The following is from an email I received this evening via my Aunt about PKU (Phenylketonuria) that I’d encourage you to read – it’s a great summary of the disease as well as offers a quick and easy way to help promote awareness and offer support:

PKU is a rare inherited metabolic disorder. PKU has an incidence of about 1:10,000 births in the US, which means about one case per year in Maine. Those with PKU are lacking an enzyme needed to break down the amino acid phenylalanine which is found in all proteins. If untreated, phenylalanine builds up in the bloodstream and causes brain damage; before newborn screening, PKU was a major cause of mental retardation.

Thankfully today, all babies in the US are screened through state mandated Newborn Screening Programs. Treatment requires following a severely restricted low protein diet – avoiding anything one would usually consider a source of protein – dairy, meat, poultry, fish, legumes, soy as well as products made with regular flour and pasta.

You might ask, what CAN be eaten? The answer is measured amounts of most fruits and vegetables, fats, sugars and specially formulated low protein pastas and baked goods that are ordered from specialty companies. For the protein needed for growth and development, a metabolic formula containing all the essential amino acids except for phenylalanine is drunk.

As the need for family education and support became clear, combined with the good fortune of being on the receiving end of a grant from The Children’s Hospital in Boston, in 1994 the first Family Camping Weekend was held for families raising a child with PKU. Educational programs for parents and children, cooking classes and support activities filled the weekend.

These annual weekends have continued over the years providing needed support and education to families. The problem is that over the years, funding has been more and more difficult to secure. For the past two years, fundraising efforts have been entirely spearheaded by families. The commitment is to provide this opportunity for every family whether or not they have the ability to pay.

To that end, Laurie, a Pampered Chef consultant, who also has a teenage daughter with PKU, has organized this fundraiser.

If you want to participate, you can do so easily online. Please follow these easy steps:

· Go to Laurie’s website: www.pamperedchef.biz/lauried
· Select “Order Products”
· Enter “Maine PKU & AD” as the organization
· Place order – all orders must be placed by 11/6

a great read

“Choose Your Own Ethnography: In Search of (Un)Mediated Life”
by danah boyd
The Society for Social Studies of Science (4S) Annual Conference
October 13, 2007

THE BLEEDING EDGE

For as far back as I can remember, I was intrigued by edges. It was always a love-hate relationship. A certain amount of healthy fear of heights kept me a safe distance from the most daunting cliffs, but I couldn’t help but wonder what was on the other side of a given edge. As I began my career as a researcher, I couldn’t help but chase after the carrots presented by the bleeding edges of technology.

Having grown up online and began my career as a computer scientist, I’ve always had a healthy skepticism of new technology and found joy in unpacking reality from hype. Nothing gives me more pleasure than understanding the differences between how a technology is conceptualized by its creators versus its users. I love weaving in and out and between circles of developers and users. But this position destroys the magic of supposed bleeding edge. The blood of venture capitalists and the edge manifested as media hype are not nearly as delectable as I had originally imagined. Yet, realizing that the bleeding edge is nothing more than a Neal Stephenson-esque dream gave me the perspective I needed to really focus on people and their interactions using mediating technologies.

My predilection or shall we say my compulsion to shatter utopic mirrors has prompted and shaped many of my research projects. I’ve tried numerous methodologies to help make sense of the interplay of people and technology. I began by building psych experiments to understand depth perception prioritization in order to show that 3D immersive virtual reality systems have hormone-based biases. I built interactive visualizations of social data to highlight how we all hold more data about each other than we realize. Lately, I’ve been obsessed with trying to make sense of how networked publics are incorporated into the lives of American teenagers. To get at this question, I embarked on a two year ethnographic study of how American youth are using social technologies as a part of their practices of everyday life. The easy way to say this is that I’ve been studying MySpace (read more).