Marsha and BJ Magol of Florida in the USA have helped PKUs around the world
with the establishment of this mailing list. Users of the service will find that
not all of the messages will be relevant or of direct interest. However, many of
the messages will be - and all of the messages will help us to better understand
PKU!
http://listserv.emory.edu/archives/pku-support-l.html
Below is a message from Marsha and BJ explaining what the mailing list is and
how it is used.
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).
Through the kind assistance of Ed Strumlauf in Pediatrics and Medical Genetics
and Bert Bruner in the Computer Center at Emory University in Atlanta, we have
started up the first PKU Mailing List for Internet users.
What is the purpose of the PKU MAILING LIST?
The purpose of this list is to provide a vehicle for communications between
families with children born with PHENYLKETONURIA (PKU). The families of children
born with PKU are scattered all over the world and it is very difficult to build
any type of support structure for these families. This list will help bring them
closer together in providing a means of communicating across the world that
doesn't exist today.
These families will use this list to share experiences in raising children with
PKU, specifically sharing cooking tips, low protein recipes, diet management,
where to get specific low protein foods and the names of other support groups in
their geographical area. This list will be for families in support of one
another. It is not intended to be a source of medical information or advice.
This must be supplied by their clinical physician or registered dietitian. This
list is to be the forum for families to share opinions, advice and experiences
in PKU diet management.
What is a Mailing List?
It is a unique service, called a listserv, that handles numerous mailings to
specific individuals. For the members of the list, all messages are sent to all
other members on a specific topic.
Give me an Example
For example, let's say you are interested in finding a certain type of yeast to
make low protein bread but, don't 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 good yeast for low protein
bread in the Minneapolis/St-Paul area?.....". You may get 20 replies or 3
replies or maybe even none. But the point is you have a forum for finding out
information from other members (as long as they participate) that directs it to
specific topics.
Still Interested?
If so, the first step is to sign up. There is no cost, no "gotchas",
no strings. All you need to do is subscribe and as the member list grows and
people begin to use the list, you will receive email messages (check your mail)
and you are free to respond to them with your comments or ideas.
Anyone in the world, who has an Internet userid, is eligible to sign up....
How do I sign up?
Right now, we are the administrators of the list. All you have to do is send us
an email at magol@gte.net requesting to be
added to the Mailing List. We will need:
- First Name (ex. Marsha)
- Last Name (ex. Magol)
- userid@domain.name (ex. magol@gte.net)
How Do I get messages to the list?
After you are set up, send your messages to:
pku-support-l@listserv.cc.emory.edu
or
PKU-SUPPORT-L@LISTSERV.CC.EMORY.EDU
Any Restrictions?
Yes, you will get a list of guidelines when you subscribe. Essentially, this
list is for PKU parents/children or PKU adults to discuss their ideas, concerns
and suggestions. This is not for discussions of other genetic disorders, not for
commercial advertising and not for topics unrelated to PKU or the management of
the PKU diet. Any users found to be abusing this list in a way unfit for the
benefit of all members will be removed from the list.
