LSA-Talk FAQ

LSA-Talk Frequently Asked Questions

Q: What is the purpose of LSA-Talk?
A: LSA-Talk is an email discussion list for members of the Lowe Syndrome Association. It is a forum for parents, friends and professionals to share questions, concerns, experiences and advice relating to Lowe syndrome and the care of individuals with Lowe syndrome. It is also a forum for discussing and sharing information related to the activities of the Lowe Syndrome Association.

Can I post a photograph to the LSA-Talk list?
Yes, with some limitations. The photo must be a JPEG (.jpg) file type, as are all photos taken by a digital camera. The total size of any message posted to LSA-Talk cannot exceed 100KB, including photo attachments. The size restriction implies that you will need to compress the digital photo before attaching it in an email and sending it to LSA-Talk. Full instructions on how to do this can be found [here].

Q: Are there any kinds of messages that should NOT be posted on LSA-Talk?
A: Please refrain from posting messages that are not related to the above topics. Do not post chain letters, computer virus alerts, email petitions, or solicitations. Also, please do not send non-jpeg attachments with your message. (Only JPEG attachments are allowed) Finally, do not send messages that have been posted on other discussion lists. If you are participating on another discussion list which you think might be helpful to other LSA members, feel free to share the information about that discussion list with LSA-Talk. Also, if you think participants of other discussion lists might be interested in joining the LSA-Talk discussion, you may invite them to become members of the LSA, after which they may join LSA-Talk.

Q: What about misuse of LSA-Talk?
A: LSA-Talk was designed as a medium for sharing supportive comments and useful information with families affected by LS. Please refrain from posting any e-mails or letters from another person without their knowledge. Refrain from posting inflammatory remarks or negative connotations when referring to another member of the group. Failing to abide by these guidelines will result in the immediate removal from LSA-Talk.

Q: Do messages have to be approved before appearing on LSA-Talk?
A: No. This is an "unmoderated" list. All messages that are sent will be posted to the group without being subject to prior approval. However, the LSA reserves the right to force moderation on any participant that violates our rules and guidelines.

Q: Who can join LSA-Talk
A: Anyone who is a member in good standing with the LSA may subscribe.

Q: Is LSA-Talk a reliable source of health and medical information?
A: Much useful and helpful information can be found by the sharing of experiences, knowledge and advice among caregivers. However, ultimate decisions regarding treatments and medication should be made by consultation with your physician. The Lowe Syndrome Association is not responsible for medical information that is shared on LSA-Talk. All LSA-Talk messages should be considered the opinion or suggestion of another member, and not medical advice.

Q: Since participation in LSA-Talk is restricted to LSA members, is this a "private" list?
A: Technically, yes. However, you may want to be cautious about asking questions and posting messages that are extremely private or personal in nature. Currently, there are about 100 participants in LSA-Talk and it is growing all the time. Email messages can easily be copied and disseminated. Privacy over the internet is a legitimate concern. Remember that you always have the option to send your message privately to an individual rather than to the entire list.

Q: When should I send a message to an individual member rather than to the whole list?
A: When the content is of an extremely personal nature, when the message is not of general interest, or when the message is directed solely at one individual, the message should go to that individual rather than to the list. For example, when a member reports on a recent or upcoming surgery and another member wants to say something like "Our thoughts are with you," this type of message should go to the individual rather than to the list.

Q: How do I post a message to LSA-Talk?
A: You will receive full instruction on posting to LSA-Talk after you have successfully registered. When posting messages, please use a subject field that describes the topic of your message. This will make it easier for readers to follow discussions by topics, or "threads." Also, when accessing the archives, readers can more easily find all the messages relating to the same topic. When the subject of a message has changed from the original topic, please change the subject heading.

Q: How do I reply to a message?
A: If you click "reply" to respond to a posted message, your reply will go to the whole list. If you prefer your message to go only to the individual poster, you must change the email address in the "to" section. If your reply is continuing the discussion of the previous topic, please leave that topic in the subject field of the message. If you are changing the topic, please change the word or phrase in the subject field, in order to describe your new topic.

Q: Can I send an attachment (such as a photo) with a message?
A: No, attachments are not allowed and will not go through.

Q: Can computer viruses be spread through LSA-Talk?
A: Although most viruses are spread through attachments (which are limited on LSA-Talk), email messages you receive from LSA-Talk carry the same risks as any other email messages. The best precaution is to install and run a good quality virus protection program on your computer, and keep it up to date.

Q: What are the "archives" and how do I get to them?
A. The archives are a historical digest of all of the LSA-Talk messages received during a particular time period. Archives are available only to registered LSA-Talk members at http://lowesyndrome.org/mailman/private/lsa-talk_lowesyndrome.org.

Q: Can I receive messages in digest form?
A: Yes, by logging in and changing your LSA-Talk options at http://lowesyndrome.org/mailman/options/lsa-talk_lowesyndrome.org/emailaddress. Replace "emailaddress" with your actual full email address. A daily digest with all LSA-Talk messages will be sent to you. Note that the subject line is "LSA Talk Digest, Volume x, Issue x", so if you want to post a reply to the list, you should change the subject line to something meaningful.

Q: I'm going out of town for awhile. Is there a way I can have my messages held until I get back?
A: Yes, by logging into your options page at http://lowesyndrome.org/mailman/options/lsa-talk_lowesyndrome.org/emailaddress and change your "Mail Delivery" options. Replace "emailaddress" with your actual full email address.

Q: How do I unsubscribe from LSA-Talk?
A: Go to http://lowesyndrome.org/mailman/options/lsa-talk_lowesyndrome.org/emailaddress and click the "Unsubscribe" button. Replace "emailaddress" with your actual full email address. A confirmation email will be sent to your email address.