NOTE: MitoDragon is a listserv intended to provide an open forum for folk who want to seek support in things related to mitochondrial disorders. This listserv is not the "Mike-L", a listserv that I use to own and administer, however similar the by-laws for the two listservs may appear to be.
Because of issues related to the closure of the MELAS Online Network (MON), I am unable to subscribe to the currently popular mito-related support listserv, "Mito". I had thought that this listserv was sponsored by the United Mitochondrial Disease Foundation (UMDF), but I was mistaken on this point. "Mito" is a privately owned and administered listserv.
The MitoDragon an attempt to gain support for the medical needs of my family, as it is known that many mito-related disorders can be hereditary.
Even if no one ever subscribes to the MitoDragon listserv, it will still help me to feel that I tried to do something to help my family.
The name "MitoDragon" is an attempt at humor. If they'd only known how much I truly like dragons...
Check this webpage for information on the MitoDragon Listserv. The List Bylaws, Instructions and related information are posted here, as well as information on how to subscribe, how to unsubscribe, and to contact the MitoDragon Advisory Committee.
These are the Bylaws for the MitoDragon ("MitoDragon" should be understood to include MitoDragon and all of it's related publications):
The MitoDragon is a listserv open to families and individuals who are dealing with the challenges and heartaches of living with mitochondrial myopathies & related disorders. Unlike some of the other mitochondrial disorder-related listservs, the MitoDragon is a "open" listserv. All subscribers are welcome. The posts, digests, and archives are, however, available only to current subscribers.
The MitoDragon Advisory Committee (henceforth referred to in this document as "MDAC") maintains the usual common sense standards for a group. The members of the MitoDragon Advisory Committee are:
- Mike Jackson (Listowner)
Please note that MitoDragon Bylaws require all subscribers to retain this information in case of a later need to refer to the instructions and policies contained herein. You should either print this out and store it where you can easily find it later, or save a copy of the monthly posting to MitoDragon.
MitoDragon Bylaws and Information: <http://www.melas.org/md-bylaw.html>
Yahoo! Groups Information: <http://groups.yahoo.com/group/mitodragon>
To Post a Message: <email@example.com>
To Subscribe: <firstname.lastname@example.org>
To Unsubscribe: <email@example.com>
To Contact the Listowner: <firstname.lastname@example.org>
Subscribing establishes an agreement between the subscriber and MDAC that the subscriber will adhere to the List Bylaws in their use of MitoDragon.
MitoDragon is an "open" format list, which means that users do not have to apply for approval to subscribe to the List. MDAC will not disapprove anyone's request to subscribe, ever; and will "bend over backward" in its efforts to maintain a subscriber's participation on MitoDragon.
To protect list members' privacy, MitoDragon archives are available only to members, and not to the general public.
Because some subscribers must pay by the minute and/or byte to download their email, and to help prevent the transmission of email-based computer viruses via the listserv, MitoDragon has been set to not permit the attachment of files to list posts.
MitoDragon is an unmoderated listserv. For a limited trial period, posts from new members are approved by MDAC before they post to the list, but all regular members' posts go directly to the listserv subscribership.
PLEASE NOTE! Only SPAM and postings totally unrelated to the listserv topic will be filtered out! MDAC will NOT filter out subscriber posts that are even marginally on topic for MitoDragon. Posts will be judged by content only.
All posts to MitoDragon shall be considered private and confidential. No part of MitoDragon or the whole thereof may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, by posting to an Internet chat or bulletin board or otherwise. Absent any particular notices, a subscriber may make copies of copyrighted, patented, trademarked, or other proprietary materials posted to the MitoDragon, provided that the materials are exclusively for personal use and that any notices contained in the materials are maintained. However, the entire content of MitoDragon, its Digest, and its related archives are copyrighted as a collective work under the US Copyright laws and copying, redistribution, or publication of any part of the service is prohibited except as otherwise provided. By submitting posts to MitoDragon, subscribers grant MDAC an unrestricted, royalty-free perpetual right and license to use, reproduce, modify, publish, translate and distribute said posts as a permanent part of MitoDragon and its archives.
(An explanation of that last sentence above: This permission is needed in order to publish your posts as part of the List. When the listserv sends a copy of your post to the subscribership it's legally considered as "publishing". As stated below in the "Listserv Policy", Your posts will not be edited. The "modify" referred to above, refers to the process that the listserv uses to format your post before it sends it to the List subscribership.)
The subscription process does not offer any means of identifying the age of a potential subscriber. The responsibility of preventing the subscription of a minor child, and of supervising said child's access to the List postings, is the responsibility of the parent or guardian, and not the responsibility of the List membership, the List Administrators, or the listserv host. Identification of a List member as a minor child, without prior approval of the child's parent or guardian, will result in the termination of the subscription.
Good manners and concern for the feelings of the others on the List will be expected of all List members. Unkindness, rudeness, threats, lewdness, ethnic or racial prejudice, off-color (sexually-oriented) humor, or harsh, vulgar, or religious-based profanity will not be permitted. The use of mild profanity, while discouraged, is permitted; though it is suggested that substitutes be used for the actual words (I.e. "damn" = "d__n", "[expletive]" = "@#$%#!&", etc..)
Due to the nature of our common bond, occasional disagreements will naturally occur over many different subjects. Healthy "discussions" are fine, but "knock 'em down and drag 'em out" arguments will not be allowed. "Venting" is also permitted, but not when it is directed at the List subscribership. A note for folks new to the Internet, using all upper case or capitals when you email is generally seen on the Internet as SHOUTING AT THE RECIPIENT(S). Try using asterisks for emphasis, *example*, or underscores, _example_, instead.
NOTE: While MDAC has no desire to interfere in the private correspondence of the List subscribership, it is hoped and encouraged that List members will carry the gracious atmosphere of the MitoDragon over into their private correspondence with other List members.
If you become the victim of a private flame because of something that occurred on MitoDragon, please send an attached copy of the flame post via email to <email@example.com>. At the discretion of the MitoDragon Advisory Committee, the perpetrator will be warned and/or deleted from MitoDragon.
A wonderful reference on "Netiquette" by Randy Ryan is available for your reading pleasure by clicking on the title of his work in this sentence, or on the link below:
by Randy Ryan
It is preferred that all posts to MitoDragon be in "normal" email format (Plain Text/MIME format). HTML-coded posts virtually double the size of emails, a very real concern to those subscribers who pay by the "piece" or byte for their email service(s). Another concern is that it is possible for an HTML-coded post to contain malicious coding that could harm a user's computer system. As stated above, all attached files will be filtered out by the listserv service.
While off-topic posting to MitoDragon is discouraged, it's certainly permitted as part of an on-topic message. ("Off-topic" refers to a subject that is not related to the general theme of the MitoDragon, that being mitochondrial myopathies and related disorders, the care of loved ones afflicted with these disorders, and the family and social issues that accompany them.)
If a subscriber is not sure if a particular message is on-topic, they are welcome to try the following:
Special Note: "Administrivia" posts (which are a normal function of most listservs, and are almost always off-topic) are exempt from this rule; however, replying to an "Administrivia" post is considered off-topic. Subscribers are not to use the word "administrivia" in any of their posts to the list. Replies to "Administrivia" posts, and questions concerning any other aspect of List administration should be addressed to the List Administrator at <firstname.lastname@example.org> These posts should NEVER be sent to the List.
- Consult these guidelines, to check criteria for on-topic posts.
- If you are still not sure of your post being on topic, consult one of the members of MDAC privately.
(NOTE: Posts concerning these subjects will receive no written response if sent to MDAC by any method other than the email address given above.)
There will be no advertising or "spamming" allowed on MitoDragon, as both are off-topic. Surveys, only on subjects related to the List topic, must be approved by MDAC prior to posting. One common unfortunate breach of listserv etiquette is the forwarding of a document, announcement, or other large publication by a subscriber who feels that it's of the greatest interest to everyone else on the List. This is really a form of "spam", and it clogs up the List and some folk's email accounts. There are several easy ways to avoid this problem:
Using "Carbon Copy" ("Courtesy Copy" in some countries), sometimes called "CC'ing", is permitted, but is discouraged in posts to MitoDragon. "CC'ing" can add unnecessary size to your posts and inadvertently reveal the addresses of your other correspondents to the list subscribership.
- One is to summarize the publication in one or two sentences or in a small paragraph, email the summary to the List, and offer to forward the actual item to any interested subscriber's personal email address.
- The other is to offer the publication to a website that will make it available to their visitors. This will also allow you to just send the website address (URL, http://www.whatever) to the List with a short description of the publication.
Using more than a few addresses in the "To:" field is also considered improper nettiqette by most list owners. If a subscriber's use of multiple addresses becomes excessive, it may result in some of the subscriber's messages not posting to the list.
"Culling" of email addresses from List posts or from any MitoDragon-related publication is strictly forbidden. There is software available that enables a user to extract, or "cull", email addresses from the email that the user receives. This is usually done to create mailing lists for bulk mailings. When this is done with posts from the List it is the same as "stealing" the return addresses from another person's mail. If a List member is found to have engaged in this practice, using the List membership, they will be immediately unsubscribed from the List.
The List Bylaws are detailed and lengthy in order to cover the legal aspects of running the listserv, but in actual fact, boil down to just six "ideals":
- Be nice, even if you're ticked off.
- Be willing to accept that someone can have an opinion different from your own, and be gracious enough to allow them to post freely about it.
- Share what you've learned, or are learning, at any level that you wish; but remember, there are more potatoes eaten around the world, than there are dishes of "fugu" (puffer fish.) <smile> (It takes 10 minutes to learn to prepare a potato, 10 years for the "fugu", and some folk still die from eating it! Keep it simple and folks are more likely to listen to and understand what you write.)
- If you have a complaint about something posted on the list, please write to MDAC at <email@example.com>, and not to the list. The first thing that is read after personal email are the Administrative Inquiries that come in from the listserv. Not only will MDAC read your post, but we will try to help you find a solution.
- If you want to share a particular list post with someone who is not a list subscriber you must ask for the permission of the person who wrote that post (and the permission of the person who wrote any post quoted in a reply.) Under no circumstances, print out for distribution or otherwise publish any part of MitoDragon, or any of its related publications, except for your own personal use. This is to protect everyone's privacy. (This includes forwarding said content to someone who is not a subscriber.)
- If your posts don't appear on the list, please don't panic or take offense. It may have been an automatic response from the listserv to something in your post. Sometimes the problem isn't even with the listserv, but with the Internet or your ISP's mail server, or possibly, MDAC may have disallowed your post for some reason. Write MDAC using the above address, ask, and we will let you know what's up.
"When I want to speak let me think first:
Is it true?
Is it kind?
Is it necessary?
If not, let it be left unsaid."
- Maltbie Babcock (1858-1901)
MDAC's Listserv Policy on Information and Opinions Expressed on the MitoDragon:
MDAC makes no representations or warranties with respect to any information contained or opinions expressed on MitoDragon (other than MDAC's own), and does not endorse, oppose, or edit any opinion expressed by a subscriber or information or material provided by a third party. Subscribers should exercise care in evaluating such information and opinions.
MDAC does not guarantee the accuracy or completeness of any information or content, nor its merchant ability or fitness for any particular purpose. In some instances, the information provided may represent opinion and judgment and/or may have been supplied by a subscriber not in any way under agreement with MDAC. Under no circumstances will MDAC be liable for any consequential or incidental loss, damage or other claims or demands arising out of a subscriber's reliance on information obtained on the MitoDragon.
MDAC reserves the right to monitor all posts to MitoDragon to ensure that online standards are being maintained. MDAC reserves the right to disclose any information on records to satisfy any law, regulation or other governmental request and to maintain the MitoDragon's online standards of conduct.
MDAC reserves the right to cooperate fully with local, state and/or federal officials in any investigation relating to any Content, including email, posted to this list or the unlawful online activities of any subscriber. MDAC also reserves the right to remove any Content that MDAC deems in its sole discretion to be unacceptable, undesirable, or in violation of these terms and conditions, and to terminate the privileges of any subscriber who misuses or fails to abide by these terms and conditions.
Limitation of Liability and Disclaimer of Warranty:
Subscribers to MitoDragon expressly agree that use of MitoDragon is at the subscriber's sole risk. MDAC does not warrant that MitoDragon will be uninterrupted or error free; nor does MDAC make any warranty as to the results that may be obtained from the use of MitoDragon, or as to the accuracy, reliability or content of any information, service, or merchandise contained in or provided through the MitoDragon. MDAC reserves the right to update, edit, remove or add content to any part of these bylaws without prior or subsequent notification to subscribers. Subscribers are responsible for maintaining an accurate and current knowledge of the content of these bylaws.
MitoDragon is provided on an "as is", "as available" basis without warranties of any kind, either express or implied, including but not limited to warranties of title or implied warranties of merchant ability or fitness for a particular purpose, other than those warranties which are implied by and incapable of exclusion, restriction or modification under the laws applicable to the terms of service. No oral advice or written information given by MDAC shall create a warranty; nor shall subscribers rely on any such information or advice.
Under no circumstances, including negligence, shall MDAC be liable for any direct, indirect, incidental, special or consequential damages that result from the use of or inability to use MitoDragon; or that result from mistakes, omissions, interruptions, deletion of files, errors, defects, delays in operation, or transmission, or any failure of performance, whether or not limited to acts of God, communications failure, theft, destruction or unauthorized access to MitoDragon, to its related publications, or to its archives. Subscribers hereby acknowledge that this paragraph shall apply to all Content of MitoDragon.
Copyright © 2001 Michael Jackson
All Rights Reserved
Press "Home Page" button to go to the Jackson Family's Home Page.