PKU Internet Group

 

PKU-SUPPORT-L@LISTSERV.CC.EMORY.EDU

Special thanks to parents Marsha and BJ Magol for setting up this internet communications service for the PKU community. It has become the best way for families and people with PKU to exchange ideas, questions, and information. Since summer of 1997 when the group started, we now have over 1000 subscribers from more than 20 countries!

If you are one of the millions who can't get enough of being on the Internet and love to send and receive emails, here's another place to share your ideas and concerns with other PKU parents (or people with PKU).

With assistance from Ed Strumlauf in Pediatrics and Medical Genetics and Bert Bruner in the Computer Center at Emory University in Atlanta, we offer this forum for Internet users connected to PKU treatment.

Who is the PKU MAILING LIST for?

This mailing list is FOR FAMILIES OF A CHILD WITH PKU, PERSONS WITH PKU, AND PROFESSIONALS INVOLVED IN PKU TREATMENT ONLY. Please, no students looking for information on PKU in order to write papers, or other "curiosity seekers"!

What is the purpose of the PKU MAILING LIST?

The purpose of this list is to provide a vehicle for communication among families of children born with PHENYLKETONURIA (PKU), for young adults with PKU, and for professionals treating PKU.  These people are scattered all over the world and it is very difficult for them to connect. This list brings all of us closer together.

The purpose of the list is to share experiences in managing PKU, specifically sharing cooking tips, low protein recipes, issues related to diet management, low protein food sources, and information about other support groups. This list is a forum for families to share information, advice and experiences with PKU treatment.

This list is for families in support of one another. It is not intended to be a source of medical information or advice. Such information must be supplied by a PKU treatment center.

What is a Mailing List?

It is a unique service, called a Listserv, that handles numerous mailings to specific individuals. When members of the list send a message to the Listserv, it will go to all other members in the group. If a member wants a message to go only to a specific person in the group, the message must be addressed to that person and sent to their private e-mail address.

An example:

Let's say you are interested in finding a certain ingredient for a low protein recipe but donít know where to start looking. You could send a message to the mailing list (once you have subscribed) and other members would get the message "Anyone know where to find (the item you are looking for) in the Minneapolis area?" You may get 20 replies or 3 replies or maybe even none. But the point is you have a forum for seeking information from other the large number of people who are members. The group is very responsive, so usually you will get at least one reply.

To Become a Member

If you would like to become a member of this group, the first step is to sign up. There is no cost, and there are no "strings attached." All you need to do is subscribe. You will receive email messages every day (check your mail) and you are free to respond to them with your comments or ideas, or just sit back and learn from the exchange. Anyone in the world, who has an Internet user ID is eligible to become a member

Parent Linda Gilbert (Philadelphia, PA) is the administrator of the list (replacing Marsha and B.J. Magol beginning November 1999). All you have to do is send her an email requesting to be added to the Mailing List. Please send the following:

First Name (ex. Linda)
Last Name (ex. Gilbert)
userid@domain.name (ex.: macpku@aol.com)

E-mail this information to: macpku@aol.com

Sending Messages To The Listserv

After you are set up, send your messages to:

pku-support-l@listserv.cc.emory.edu or
PKU-SUPPORT-L@LISTSERV.CC.EMORY.EDU
(either upper or lower case letters work)

Are There Other Rules And Procedures For The Listserv?

Yes! In order to keep the group focused and easy for everyone to communicate, members are asked to observe the rules and procedures listed below. For the benefit of everyone, any member who does not abide by one or more rules is subject to being removed permanently from the list:

The Listserv is open to anyone who chooses to join and will be self-supported by its members. The PKU Listserv is like any other organized gathering of people: there are points of etiquette that everyone is expected to follow. Please read this completely before you join the Listserv group.

  1. Once you have initially joined the Listserv group by e-mailing macpku@aol.com, you can REMOVE yourself from the Listserv without bothering Linda Gilbert.

    • To REMOVE yourself from the Listserv, send an e-mail to:

    LISTSERV@LISTSERV.CC.EMORY.EDU

    In the body of the message, type SIGNOFF PKU-SUPPORT-L

    • To ADD yourself back to the Listserv, send an e-mail to:

    LISTSERV@LISTSERV.CC.EMORY.EDU

    In the body of the message, type SUBSCRIBE PKU-SUPPORT-L <First Name Last Name>

  2. Please sign your Name, City, State, Country and Relationship to PKU to each of your e-mail postings.

  3. Answers to questions should be mailed back (point-to-point) to the person asking the question. The person who originally asked the question then has the responsibility of summarizing the answers and sending the summary back to the Listserv if it is deemed of general interest to the group.

  4. If you want to browse on a particular subject, (for example "DONUTS"), address your e-mail as follows:

  5. To: LISTSERV@LISTSERV.CC.EMORY.EDU

    Then, in the body of your e-mail type ONLY this one-line command, then send your message:

    SEA PKU-SUPPORT-L DONUTS

  6. To review who is currently subscribed to the PKU Listserv, please send a command as follows:

  7. To: LISTSERV@LISTSERV.CC.EMORY.EDU

    REV PKU-SUPPORT-L BY NAME

  8. Please refrain from using file attachments, different fonts, and all capital (upper case) letters.

  9. Discussions not related to PKU are not allowed. If you want to discuss something other than PKU, please take it to the appropriate newsgroup. Commercial Advertising and Chain Letters of any sort on the Listserv are not allowed.
  10. The PKU Listserv is not moderated. Every message that is sent is passed on to every member of the Listserv. Please use your own judgment about the contents, since e-mail content may include opinions and beliefs, not necessarily facts (even though they may be stated as facts).

  11. PLEASE DO NOT ISSUE PERSONAL ATTACKS OR USE PROFANITY. Rude or hostile verbal attacks will not be tolerated. Everyone one on the Listserv has the right to be treated fairly, kindly and with respect. Anyone who violates this rule is subject to immediate removal from the group.

 


Last update: 07/00
National PKU News: www.pkunews.org
E-mail: schuett@pkunews.org