cj#292> Internet to the rescue…


Richard Moore

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



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

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
And so began an internet search...
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.
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.
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"...
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.
"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