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Hey Janet - when you're right, you're RIGHT! This certainly IS a new media and it's up to US to learn how to utilize it to squeeze the maximum information from it (Hmmm.... wonder if there's a class in "Web squeezing 101" out there) <grin> I would suspect that amongst our 1600 List members that there's 1600 different levels of Internet/Web savvy-ness (or lack thereof!!). THAT'S one reason we need to pool information and knowledge between us - it speeds bringing us ALL up to at LEAST the minimum level we need to get 'round the Web and the Internet (which are actually two different entities, I understand). Sooooo, m'dear, we, and all other Netizans, are constantly learning, and by learning we're growing, and by growing we'll be able to speak out on the Web, and by speaking out on the Web, we won't continue to be invisible for long. MY only problem with learning 'bout the Web and Interet is that it seems that by the time I finally learn something, there's a software upgrade which puts me back to square one for a while! <ruefull smile> I mean, REALLY.... it gets to be kinda embarassing to call Microsoft Tech Support and find the techies all seem to know me by NAME! <giggle> Barb Mallut [log in to unmask] -----Original Message----- From: janet paterson <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, November 27, 1998 4:29 AM Subject: Re: Getting REAL PD Facts to the Public / opportunity is knocking >hi barb > >At 13:30 1998/11/27 -0800, you wrote, in part: >>After the news of Michael J. Fox having PD was made public a >>coupla-three days ago, I surfed a variety of online newspaper's >>sites to see what was said about the disease itself. >> >>There were TONS of articles about Fox and how he's made it thru the >>past 7 years living with, and battling against PD. Most articles >>were linked to the Web sites representing a wide variety of highly >>respected hospitals, movement disorder units, and national agencies >>claiming to represent local, regional, national, and international >>Parkinson's communities.... NOT sent by people WITH Parkinson's ... > >not to 'jump' on you barb >but >this is news? > >isn't this the core of the 'visibility problem' >that we've been railing about for the past couple of years? > >the big, big, and may i say, BIG difference here >is in the fact that there were 'TONS of articles' about mjf >this amount of publicity about pd has never happened before > >the kind of grassroots work done by the pan forum for the past five years >in washington dc in re the udall bill funding >has never been done before >because >there has never been a medium like this before >there has never been a cyber-family like us before > >the speed of communication alone is breathtaking > >[e.g. updating my sister hour by hour on wednesday - >- 'it's on larry king tonight - no >- 'it's on 20/20 tonight - no >- 'it's on 20/20 on friday night'] > >if we see / hear / smell inaccurate pd information >and want to make sure that those involved make corrections > >it's up to us >to write / call / yell whenever we encounter this stuff > >mjf's courage and generosity in 'coming out' with his pd >is a perfect sparking point >for clarification > >it's up to us >to take full advantage >of what has been handed to us on a plate >[sorry if you are still turkey-stuffed] > >personally, >since the story has been initially given to people magazine by mjf, >my initial thought is to write a response to people magazine >[but only after i read the article!] >[today!] > >hey! >somebody answer that door, will ya?! > >janet > >janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada >[log in to unmask] >http://www.tvtalkshows.com/http://www.tvtalkshows.com/