Friday, January 21, 2011

Doing Good Things Together

I've spent a lot of time in the past few weeks explaining to everyone I meet why I think ordinary people might be willing to help acquire ebook rights for the public commons. Meanwhile, I kept noticing how people are getting together to do other good things.

At ALA Midwinter, there was tweeting going around about an effort by four twittering librarians, Andromeda Yelton (@ThatAndromeda), Ned Potter (@theREALwikiman), Jan Holmquist (@janholmquist), and Justin Hoenke (@JustinLibrarian) to "buy India a Library". As of Wednesday, they had raised £1384; the fund raising ends today, so hurry on over if you want to participate.

On the mailing list for organizers of the Code4Lib conference, Dan Chudnov was agitating for a way for anybody to become a conference sponsor. There were a number of minor issues to overcome, but Kevin Clarke took up the challenge and created a ChipIn page to collect money from those who wanted to contribute to a sponsorship. This page raised $1,240 from 28 contributors. (Sorry, too late for that!)

I also found out about an ambitious effort by Michael Porter and friends called Library Renewal. They've created a non-profit organization to explore "new content solutions for libraries, while staying true to their larger mission." This is an effort that's still in its formative stages; it's an effort you can join and help shape.

These three projects are in all the library world, but please don't think that good people doing good things aren't everywhere around you. I've been inspired by my college friend Noel Valero. After graduation, he worked as an aerospace engineer and then as an IT consultant, until he began to have trouble with spasms in his arm. He spent a lot of time seeing doctors who were unable to help him until finally, with the help of another classmate, he was diagnosed with dystonia, a little-known but not-so-rare disease that causes progressive loss of motor control.
Dystonia is the 3rd most common movement disorder, with an estimated 500,000 patients diagnosed with primary and secondary forms of the disease and possibly at least another 500,000 others that are undiagnosed or misdiagnosed. Yet Dystonia lags significantly behind in research funding when compared to other neurological disorders.
Many sufferers of dystonia lose hope amid the progression of the disease, partly because of the isolation it forces on people. Simple everyday tasks become huge barriers. Even holding a book to read it can be difficult. One dystonia sufferer that Noel introduced me to reports that she can only manage her graduate school textbooks by chopping off their spines and dividing them into easy-to-hold segments. Driving a car or typing on a computer can become exhausting activities.

With loving support from his family and friends, Noel has climbed out of his initial despair. He started reaching out to other dystonia sufferers on Facebook (his daily joke posting is a resource for non-dystonia-sufferers as well!) and was surprised to find how much it helped for people with dystonia to be able to support each other. In 2009, he took these efforts to the next level by forming the American Dystonia Society.

On February 2, Noel will be on an episode of "Mystery Diagnosis". If you have access to the new "Oprah Winfrey Network", please join me in watching the show (or record it for later viewing). And if you enjoy reading this blog (or if you don't), I would be honored if you made a donation of any size to the American Dystonia Society in appreciation.

In possibly related news, the blog's Amazon Associate revenue statement for 2010 just came in: $10.04.
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