Purpose, Membership & Subscription

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CYSTIC-L is an email support-group for people with Cystic Fibrosis and their friends, families, and health-care providers. It includes both casual banter about the varied impact that CF has on our lives, as well as technical and medical information exchanges that help us to overcome the more unpleasant factors that this silly little gene imposes upon us.

Currently, membership is about 600, mostly parents and patients, and some health care professionals. Most subscribers are in the USA, some are in other countries (most in countries where English is a primary language). Current traffic levels are running around 20-50 messages per day; a digest option is available which compiles messages and distributes them once every 24 hours.

To subscribe send an email message to [email protected]
 that says only:

    SUBSCRIBE CYSTIC-L your-first-name your-last-name

(do *NOT* send this note to CYSTIC-L!)
 

A Brief History (11/97)

CYSTIC-L is the first Internet mailing list devoted to cystic fibrosis. It was founded by Antony Dugdale, a PWCF and a graduate student at Yale, in February, 1994. The ListServ software on the Yale server was the first host for CYSTIC-L. Archives for CYSTIC-L beginning in June, 1994 can be accessed at CF-WEB. The following history relies heavily on those Archives.

  • 30 Jun 1994 – 78 subscribers
  • 26 Nov 1994 – 160 subscribers

In February, 1995 the first FAQs for CYSTIC-L were available:

FAQ-LIST was created and maintained by Antony Dugdale and contained the necessary information to allow subscribers to manage their subscriptions.

FAQ-CF was created and is maintained by Ron Trueworthy and contains information and resources related to CF for participants on CYSTIC-L. Most of the information has been drawn from notes posted to CYSTIC-L. The name of this document changed to “The CYSTIC-L FAQ” when the two FAQs were combined.

  • 6 Jun 1995 – 325 subscribers

By the Spring of 1995 it became more and more difficult for Antony to spend time on CYSTIC-L; he trained Ron Trueworthy to perform list management duties. By July, 1995, when Antony married, Ron Trueworthy was filling in for Antony in managing CYSTIC-L during Antony’s absences.

  • 14 Sep 1996 – 400 subscribers

In the fall of 1996 there was much discussion on the list regarding the desired mix of “medical” and “social-support” messages. In September, 1996, Antony made two changes to CYSTIC-L designed to better serve the varies interests of the subscribers. After experimenting with raising the per day message limit to 75 messages for a couple of weeks, Antony conducted a vote in which the majority asked that he set the limit back to 50 messages per day. He also implemented the TOPICS function of the ListServ software to allow those who want to receive only those messages that authors deem to be of “medical” interest, to do so. Ron now served as “co-owner” of CYSTIC-L (and Antony’s posts became increasingly rare) and implemented these decisions.

In early 1997 Yale decided to move CYSTIC-L (and their other mailing lists) to a different listserver software (ListProc). CYSTIC-L was actually serviced by ListProc in April, 1997. During this process Yale became aware that CYSTIC-L wasn’t being actively managed by a member of their academic community and decided they would no longer be able to host CYSTIC-L. Ron sought a new host. A Canadian university agreed to host us, however they use Majordomo which is a considerably less capable listserver. LSoft, the creator of the ListServ software which was the first home for CYSTIC-L, also offers list hosting services. The owner of LSoft agreed to provide CYSTIC-L a home for free and with absolutely no strings of any kind attached. [LSoft hosts a number of lists free of charge; the largest number being the lists Apple used to host but couldn’t afford any longer. The author/owner of LSoft has a big heart and likes to give back to the community when he can. CYSTIC-L has good reason to be grateful for his generosity in providing us with cutting edge list hosting services.] CYSTIC-L moved to the LSoft servers in May, 1997.

Also in May, 1997, CF-WEB began hosting a “clickable” (HTML) version of the CYSTIC-L FAQ, in addition to the plain text version and the CYSTIC-L Archives.

  • 25 Aug 1997 – 585 subscribers

In October, 1997, CF-WEB began to host a “clickable” (HTML) version of the CYSTIC-L Research News (a compendium of newswire stories relevant to CF which have been posted to CYSTIC-L by subscribers).

  • 14 Nov 1997 – 642 subscribers

In February, 1998, CYSTIC-L voted to increase the permissable number ofmessages posted per day from 50 to 75.  The actual number of messages

posted continues to range from 20-50 most days however.

  • 27 May 1998 – 713 subscribers

In the Spring of 1998 an automatic procedure was implemented to requiresubscribers to confirm their subscriptions bimonthly.  This procedure weedsout abandoned addresses and ensures that only currently interested peopleare subscribed.  People who have posted within the last two months are

automatically exempt from this procedure.

  • 23 September 1998 – 664 subscribers

On September 7, 1998 the first CYSTIC-L Homepage was released for use athttp://www.erols.com/twinoaks/.  This beta site quickly evolved, and three

weeks later moved to our permanent address at http//Cystic-L.org where it is hoped it will continue to improve.

On October 8, 1998, a new web site featuring advanced design and technology enabling easier navigation and increased functionality was given to CYSTIC-L by Marty Colletti, a subscriber and web designer.   And the story continues …

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You Don’t Need a Computer! (10/97)

If you don’t have a computer, there are now alternative ways to get connected.

WEB-TV:

All you need is a $400.00 box that sits on top of your television set, and to pay a $19.95 per month fee to a service provider. What’s that mean? It means that you should go to your local television store and ask about WEB- TV. They sell you the box, and the manual gives full instructions on how to hook it to you TV (similar to a video cassette recorder), and where to send your monthly check for service. You can still use your TV as before, but now you are connected to the Internet and can send and receive email and view World Wide Web (WWW) sites when not watching TV. Buy the optional keyboard, you’ll need it for writing email.

Both Magnavox and Sony sell WEB-TV boxes under their brand names. If you have a friend with WWW access, talk them into showing you these sites for more information (they’ll be glad to show off!):

The originators of WEB-TV: http://webtv.net Magnavox info:http://www.magnavox.com/hottechnology/webtv/webtv.html Sony info: http://www.sel.sony.com/SEL/webtv/index.html.

NOTE: WEB-TV cannot store email or other material you view on the screen in your box or on floppy disks; email is stored only on the WEB-TV site. A printer for WEB-TV is supposed to be made available during the first part of 1997.

SEGA SATURN & NETLINK (8/97):

Allows: email, IRC, Sega games, on-line gaming is slated to start in June, 1997. Limitations – storage capacity, no printer, can’t store and save e-mail. Apparently Sega in Japan already has a printer out, hard drive, MPEG adapter, video phone and scanner!!! Price: (In Canada) Sega Saturn: $279.99; Netlink modem: $279.99, plus keyboard – $34.99, keyboard adapter – $34.99, mouse – $39.99. 3 free games came with Sega Saturn, too. After the fact, I found a place that sold the “kit” (no mouse) for approximately $600.00. (Electronics Boutique). More info:http://www.sega.com/features/netlink/techspec.html

As of 6/97: Sega has dropped the price of the Sega Saturn video game system! The “Netlink” modem is now half price – $139.99 in Canada! (Approximately $99.99 in USA) Saturn video game system now $199.99. (was $279.99) To receive e-mail you need a keyboard and a keyboard adaptor. They also sell a “kit” – Sega Saturn and Netlink modem & it includes a keyboard”

RCA NC (10/97)

Another box that hooks to your TV and a telephone jack (cord included) — $200 with wired keyboard, $250 with a wireless keyboard. Add $19.95 per month for unlimited access to the WWW and email, plus a localized on-screen TV program guide which is automatically updated while you sleep. Most major brand computer printers can be added. The on-screen type size may be too small for some users to view comfortably.

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Got Computer? Get Email and a Modem! (5/97)

What if you have a computer, but are not connected to the Internet? You don’t need the WEB-TV box in this case, you just need an account with an Internet Service Provider (ISP) and a box called a modem (plugs your computer into the telephone lines). The modem costs about $150.00 and the account costs about $19.95 per month. You can use your existing telephone line (though you can’t make calls while sending or receiving email or other traffic). Which ISP should you open an account with? There are hundreds of ISPs; ask around and see which one people you know are using and if they are satisfied. Your ISP can, and should, help you to get everything working together: your computer, their software, and your modem. If they can’t or won’t, fire them and hire another ISP.

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