Huntington's Disease and the  Internet

Richard M. Dubinsky, M.D.
University of Kansas Medical Center
Dubinsky@kuhub.cc.ukans.edu

To get to the Internet you will need:

Browsing:
The Internet is a great place to browse, you can quickly lose yourself for a significant period of time. The most fun way is browse and to see what you can find. The most efficient way is to look for a particular area and to go there and nowhere else. To find sites use a search engine and keywords.

Searching can be done as a word or phrase or using Boolean logical connectors. For example you can search for <huntington> and find out a lot about Huntington beach, Huntington high school, the Huntington family tree You will find many of the same links if you use <huntington's>. If you use <huntington AND disease> or <huntington disease> you will find more sites that are specific for HD.

Sites are listed at the server for the search engines. To have a site listed you must first post (or ask) the site to list the URL (see below). The site <submitit.com> is a collection of submissions for a large number of search engines. Usually the author submits the sites to search engines.

Search Engines:

Lists of Addresses: Who is Url and why does everyone want me to go to him?
URL is the abbreviation for Universal resource locator, the address for a site. Databases are kept on all servers that convert the URL (e.g. mysite.com) to the hexadecimal number (do you really want to get into base 16 numbers?) for you. The old way to get to a site was to type in:
http://www.hdsa.org
Now with most browsers you can just type in the name:
hdsa.org
And get there.

Who is Dot and what does she have to do with this?
The address, for US sites is always name followed by a period (known as a dot) followed by a suffix. The suffixes are com for commercial, mil for military, gov for government, org for organization, and net for network. Sites outside of the United States are name followed by a dot and a two letter country code (e.g. ca for Canada).

 List Server and Chat Room Etiquette
List servers are great places to share ideas, but there are several important points to remember.

Huntington's Disease List Servers and Message Boards: Go to < http://www.kumc.edu/hospital/huntingtons/discuss.html> instructions on how to join. Please note that the address for posting messages for the Hunt-dis list server is different from the address of the list server that you use for subscribe and unsubscribe commads.

List server instructions:
<LISTSERV@MAELSTROM.STJOHNS.EDU>
Subject: File: "LISTSERV REFCARD"
LISTSERV(R) System Reference Library, release 1.8c --------------------------------------------------
Copyright L-Soft international, 1986-1996

Last update: 13 Aug 1996

Commands are listed in alphabetical order, with the minimum acceptable abbreviation in capital letters. Angle brackets are used to indicate optional parameters. All commands which return a file accept an optional 'F=fformat' keyword (without the quotes) that lets you select the format in which you want the file sent; the default format is normally appropriate in all cases. Some esoteric, historical or seldom-used commands and options have been omitted.

List subscription commands (from most to least important)
SUBscribe listname <full_name> Subscribe to a list, or change your name if already subscribed
ANONYMOUS -> Subscribe anonymously

SIGNOFF Remove yourself:
listname - From the specified list
* - From all lists on that server
* (NETWIDE - From all lists in the network

SET listname options Alter your subscription options:
ACK/NOACK/MSGack -> Acknowledgements for postings
CONCEAL/NOCONCEAL -> Hide yourself from REVIEW
Mail/NOMail -> Toggle receipt of mail
MIME/NOMIME -> Prefer/avoid MIME format (especially MIME digests)
DIGests/INDex/NODIGests/NOINDex -> Ask for digests or message indexes rather than getting messages as they are posted
REPro/NOREPro -> Copy of your own postings?

TOPICS: ALL -> Select topics you are
<+/->topicname subscribed to (add/remove one or replace entire list)

Options for mail headers of incoming postings (choose one):
FULLhdr or FULL822 -> "Full" (normal) mail headers
IETFhdr -> Internet-style headers
SHORThdr or SHORT822 -> Short headers
DUALhdr -> Dual headers, useful with PC or Mac mail programs
SUBJecthdr -> Normal header with list name in subject line

CONFIRM listname1 <listname2 <...>> Confirm your subscription (when LISTSERV requests it)

Other list-related commands
---------------------------
GETPOST listname ref1 <ref2 <...>> Order individual messages from list archives

INDex listname Sends a directory of available archive files for the list, if postings are archived
Lists <option> Send a list of lists as follow:
(no option) -> Local lists only, one line per list
Detailed -> Local lists, full information returned in a file
Global /xyz -> All known lists whose name or title contains 'xyz'
SUMmary <host> -> Membership summary for all lists on specified host
SUMmary ALL -> For all hosts (long output, send request via mail!)
SUMmary TOTAL -> Just the total for all hosts
Query listname Query your subscription options for a particular list (use the SET command to change them)
* -> Query all lists you are subscribed to on that server
REGister full_name Tell your name to LISTSERV, so that you don't have to specify it on subsequent SUBSCRIBE's
OFF Make LISTSERV forget your name
REView listname <(options> Get information about a list
BY sort_field -> Sort list in a certain order:
Country by country of origin
Name by name (last, then first)
NODEid by hostname/nodeid
Userid by userid
BY (field1 field2) -> You can specify more than one sort field if enclosed in parentheses: BY (NODE NAME)
Countries -> Synonym of BY COUNTRY
LOCal -> Don't forward request to peers
Msg -> Send reply via interactive messages (BITNET users only)
NOHeader -> Don't send list header
Short -> Don't list subscribers
SCAN listname text Scan a list's membership for a name or address
SEArch listname word1 <word2 <...>> Search list archives or: word1 <word2 <...>> IN listname
FROM date1 -> From this date
TODAY -> From today
TODAY-7 -> In the last 7 days
TO date2 -> To this date
WHERE
SUBJECT CONTAINS xxxx -> Only this subject
AND/OR
SENDER CONTAINS xxxx -> Only this author
Complex boolean operations are supported, see database guide
STats listname <(options> Get statistics about a list (VM)
LOCal -> Don't forward to peers

Informational commands
----------------------
Help Obtain a list of commands
INFO <topic> Order a LISTSERV manual, or get
<listname> a list of available ones (if no topic was specified); or get information about a list
GET fn ft <filelist> <(options> Order the specified file or package
GIVE fn ft <filelist> <TO> user Sends a file to someone else
INDex <filelist> Same as GET xxxx FILELIST
(default is LISTSERV FILELIST)
SENDme Same as GET


Return to the introduction page of Caring for People with Huntington's Disease 
KUMC Pulse This page was created on June 2, 1999. This home page is supported by the Department of Neurology at the Kansas University Medical Center and by the Huntington's disease support groups
Suggestions and comments are welcome. Please mail them to me at: Dubinsky@kuhub.cc.ukans.edu