@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@ Date: Tue, 31 Oct 1995 14:30:49 -0800 Sender: David Allwardt <•••@••.•••> Subject: Good Press We could use more stories like this. In the Capitol Times - Madison WI Oct 31, 1995 By Sandy Rovner of the Washington Post Headline: INTERNET HELPS SICK ITALIAN CHILD Sub Head: An Internet search for help led two friends from Venezia, Italy, to a medical librarian in Fort Wayne, Ind,: a medical foundation in New York; a support group based in Madison, WI.,; and perhaps help for their sick friend from two medical specialists -- one in New York and another in Israel. Some of the Text follows: This note appeared on the Internet during the third week in July: "Hello! We are two friends from Venezia, Italy: Jo and Cris. Alice, our friend, has a very bad disease, so she has asked us if we can help her: She doesn't feel the physical pain...and she is only 9...We are trying to contact a hospital in Michigan, probably at Lansing, because we know that in that hospital there is the other person who has the same bad disease. We know only the Itailan name: disautonomia familiare del II tipo...We need... any other information that could help us to find this hospital..." [snip] And so began an internet search... [snip] Even though Alice's story is still unfinished, her search for help on the Internet is a striking metaphor for the uses of this international communications network for medical purposes. Alice Lazzaroni has an extremely rare genetic disorder that affects children of Italian, Greek and other Mediterranean heritage. [snip] Some 4,500 miles away, Barry Orton, a telecommunications professor at the University of Wisconsin, has an 8-year-old son, David, with a closely related illness, familial dysatonomia (FD) that affects Jews of Eastern European ancestry. Is is also extremely rare. Only ablut a year ago, Orton and some other FD parents began communicating on the Internet to compare notes. Contacted by the medical librarian who saw the note from Cris and Jo, these parents of FD patients embraced the Lazzaronis, giving them their first contact with other parents with many of the same problems and access to medical specialists familiar with the disorder. [snip] Cris and Jo posted their note on every newsgroup...that had the word "Michigan," "genetic," "disease" or "health," which means that it must have appeared on hundreds of sites. There are more than 13,000 Uesnet newsgroups on the Internet. Most of the 50 or so responses were from people offering prayres or sympathy, until their note was spotted by Catherine Arnott Smith, a medical librairian for an insurance company in Indiana. Through Smith, they found Orton. He and other FD parents had established FD Net, a "Listserv"... [snip] Now the Lazzaronnis are full-fledged members of FD Net. Sandro Lazzaroni wrote to the net this month, "Me and my wife thank you all because you all have done in a few weeks more than the doctors (in Italy) have done in eight years..." No one knows how many of these sorts of matches are made on the Internet because no one counts or keeps track of the hundreds of health services available. Still, patients, doctors, researchers, and advocacy groups are increasingly turning to cyberspace as a disseminator for health and disease concerns. [snip] "Universities have been doing this for a long time," said Catherine Arnott Smith, the medical librarian who first spotted the note from Cris and Jo. "I think it is really good to write about this. As someone who uses the Internet every day to access health information, I amsick and tired of seeing it publicized as a cross between a CB radio and a singles club for pedophiles." [End of Article] It is interesting to note that this story appeared on page 3 of the "LifeStyle" section (comics, TV listings, Dear Abby, etc.). While the "pedophile" type articles always appear on the Front page. The positive stories about the Internet always seem to get buried, if they get printed at all. @@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@ ~=-=-=-=-=-=-=-=~=-=-=-=-=-=-=-=-=~--~=-=-=-=-=-=-=-=-=~=-=-=-=-=-=-=-=-=~ Posted by Richard K. Moore (•••@••.•••) Wexford, Ireland (USA citizen) cyber-rights co-leader CyberJournal editor ~=-=-=-=-=-=-=-=~=-=-=-=-=-=-=-=-=~--~=-=-=-=-=-=-=-=-=~=-=-=-=-=-=-=-=-=~
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