Don  Bridget, in Dingle Bay, Ireland

FAPG Posting Guidelines and Policy of Confidentiality

Posting to the List
Virus Detection Software Required
Flaming Not Allowed
Chain Email
Religious Posts
Political Posts
Sharing of Trial Experiences
Virus Warnings
Use Plain Text and Send No Attachments
Subject Line
To Reply
Policy of Confidentiality
How to Change your Password or Email Address
How to Request No Mail


Posting to the List Return to Top
After you have been subscribed to FAPG and installed anti-virus software on your system, you may send messages to FAPG by addressing them to the list address:

Take special care to not post private email interactions to FAPG without the sender's permission. These conversations should usually be continued off-line.
Virus Detection Software Required Return to Top
If you already have an anti-virus program, make sure that the virus descriptions are updated at least every 30 days. Please do not post to the list until you have anti-virus software installed. If you are not familiar with anti-virus software, here are a few sites that offer protection tools. These are free or they offer free trials so you can try before you buy. There are also many others available that are not listed here.
Flaming Not Allowed Return to Top
FAPG is an email group created to give and receive: advice, information, different viewpoints and positive support. When a disagreement on the list arises, we can: 1. agree to disagree, or 2. disagree with kindness and respect, remembering to always follow the rules of common courtesy. Flaming will not be tolerated on the FAPG list. It is the equivalent of berating someone or their ideas over email. Inflammatory statements will be considered flaming.
Flaming will put your list membership at risk!

   Berate - to scold or condemn vehemently and at length
   Inflammatory statements - those that tend to excite to anger, disorder, or tumult
Yelling Return to Top
Words or phrases written in all capitals in email etiquette is considered yelling. Please refrain from using all caps in list email.
Profanity Return to Top
FAPG is a "G-Rated" email group. No matter how it is presented, profanity in a posting to the FAPG list is not allowed. Using profanity will put your list membership at risk.
Chain Email Return to Top
Please do not forward chain email. If you like a poem or story included in a chain email and think that it is of general interest to the membership of the list, clean it up (retype or get rid of all the forward arrows), retype the subject line and delete the part that makes it a chain letter (ie: send this to all your friends, or you will have good luck if you forward this on, etc.). Then you may submit it by including a few lines of introduction (ie: I'm sending this poem to FAPG today because it helps us focus on what we do have, rather than what we don't have. - your name) In the subject line please put: poem, story, or something else to identify the contents of your message so list members may delete if they are not interested.
Religious Posts Return to Top
Please be sensitive that our group as a whole represents many religions, cultures and beliefs. If you feel that the general membership would be interested and you do post in this category please put something in the subject line that identifies the type of post.
Political Posts Return to Top
In this divisive political climate political discussions should be done off list or in another forum. FAPG was created as a place for parents to share and get information/support in the day-to-day issues of dealing with FA in our families. Historically political discussions here have often become heated and dominant. They should not be shared here even though you might feel they may be pertinent to general disability issues. You may contact the list moderator(s) for approval of an exception that directly relates to FA.
Sharing of Trial Experiences Return to Top
Friedreich's Ataxia and other Ataxias are in an exciting time involving clinical trials and important tests/experiments which we all hope will lead to drug approvals, availability and insurance coverages. These trials, and the researchers conducting them, require that ataxians and parents not talk about their trial medical experiences lest other (potential) participants after them be influenced by their experiences.

Therefore, starting when you are asked to do so by the researchers or doctors involved, but at the latest from the beginning of Phase 1 trial status it is important to understand that it is in our kids best interest that until a treatment is either approved or the research is discontinued, no conversation which includes the sharing of medical experiences or symptomatic responses is permitted relating to:
  • Any study for a potential FA treatment or cure
  • Any study for a potential treatment or cure for any other Ataxia (because FAPG includes parents of other Ataxians)
This applies to all studies, whether double-blind or open-label. Please note, it is ONLY the sharing of medical or symptomatic experiences that is prohibited, not the sharing of:
  • The fact someone is in a trial
  • The good or bad logistics of participating in the trial
  • Hospital and travel logistics associated with the trial
  • Whether Dr. Lynch's newest jokes are any good (see below)
This policy is consistent with, and in response to, Dr. Lynch's recent message:
I heard about the overt discussion of trial reactions. The issue with this is that such reviewing of ones perceived clinical response entrains future responses - that can create a mess. People always want to feel they responded as others did - it creates a sense of comfort. However, it can confuse the results of not only subjective questionnaires, but also "objective" tests since effort on such tests is always a confounder. This is always crucial in double blind trials, but in open label trials it can make it harder to figure out who truly responds to drug best. That is the real goal of our steroid study, so entraining responses will hurt us in the long term; these are very small studies so small issues can make a difference. Thus its best to limit discussion to the non medical component of studies: travel, where to stay, getting around PHL, whether Dave had any new jokes etc.
Virus Warnings Return to Top
Please do not post any unverified virus warning to FAPG. To verify a virus refer to McAfee Virus Information Library.
Use Plain Text Return to Top
Do not send HTML, rich text, stylized email, or messages in "quoted-printable" format. Not all email programs of list members will recognize such formats. Please send messages in ASCII or plain text.
Subject Line Return to Top
Do title your email in the ‘subject line’ to relate to the topic of your email. For example, when you are sending your personal introduction you could put something like ‘Jane Doe Introduction’ in the subject line. If your email is a question about supplements, then you might put ‘Supplement Question’ in the subject line.
To Reply Return to Top
Take special care to not post private email interactions to FAPG without the sender's permission. These conversations should usually be continued off-line. To reply to the author only of an email posted you would click on "reply". To reply to the entire FAPG list, click "reply to all" in your software. I would encourage you to "reply to all" if the content is of general interest to the list and not of a personal nature. If the FAPG list address does not appear in the heading of your email in the "To:" field then you can add it and (*a few) other email addresses as you desire by separating them with commas. Instead of having to remember and type out full email addresses when composing email, most people use "nicknames" or "address books" which are available in most email software packages.
Policy of Confidentiality Return to Top
The following is the policy of confidentiality that we have on the FAPG list. The posts our members send in are intended for subscribed FA parents only. This list was created so we could speak to each other openly and honestly without the fear that what we say could somehow get back to our children, or yours. You should not allow family members or friends to read the FAPG emails in their original form.  Do not forward any of the postings in their entirety or let any non-FAPG member read the list mail without the author's permission.  Some families share one email box at home. In this case a separate folder can be created where you store FAPG mail. Some software has the capability of having FAPG mail sorted and delivered to its own folder automatically. It is up to each FA parent to explain our policy of confidentiality to other family members having access to FAPG list mail.  Remember, if you desire to share the posting from the FAPG list with your children or others, kindly get the author's permission first. One of the bedrocks of this group is that we must be able to trust each member to follow this policy of confidentiality. If a member's actions demonstrate that we cannot trust them to maintain the confidentiality of other members' posts, that member will be unsubscribed from FAPG.

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