Bulletin Board Policy/Etiquette
Updated May 11, 2006

The National Spasmodic Dysphonia Association (NSDA) hosts this private moderated bulletin board to encourage patients with Spasmodic Dysphonia (SD) to ask questions and share their experiences and frustrations.

The NSDA Board of Directors has appointed Laurie C (Moderator-LC) and Will Blum (Moderator-WB) to moderate this Bulletin Board. Technical administration of the board is provided by Bob Campbell.

The bulletin board rules are defined and updated from time to time by the Executive Committee of the NSDA and are administered by the Moderators. The rules and policies are presented in the form of an FAQ (Frequently Asked Questions).

Q:     What is a 'moderated' BB?
A:     Each and every post is reviewed by the moderators to ensure it meets the bulletin board guidelines. The Moderators may apply the BB rules by deleting, modifying or giving less prominence to any post or thread that is repetitive, not informative, not supportive or not related to SD. Posters will be advised by the NSDA when their posts are modified or deleted, but there will not always be a discussion of, or justification for, every action taken. The Moderators are like baseball umpires. Not every call is perfect but it is final.

Q:     What is a 'private' BB?
A:     The BB is hosted and paid for by the NSDA. The NSDA has the final say on the contents of all posts that are published on the BB. The NSDA encourages full and frank discussion of SD-related treatment methods and SD-related patient experiences, within the BB guidelines, but posters cannot necessarily expect NSDA to publish any and all of their opinions on the BB, and on occasion it may be more appropriate for posters to express their opinions elsewhere.

Q:     Who can register to make posts on the BB?
A:     The BB is intended primarily for members of the NSDA and other SD patients. Posts that are soliciting for patients on behalf of treatment providers will be deleted.

Q:     How many posts can a poster make?
A:     Each poster can make up to 4 posts in a 24-hour period.

Q:     Is the NSDA responsible for the content of posts on the BB?
A:     No. All messages on this bulletin board represent the personal opinion of the individual posting the message. The Moderators will delete posts that are abusive, contain personal attacks or that are possibly libelous.

Q:     Who can read posts on the BB?
A:     The content of the BB is accessible to anyone, so we suggest posters exercise caution when disclosing personal information.

Q:     Can a reader rely on the BB for healthcare advice?
A:     Comments made by SD patients on this bulletin board should not be considered as medical advice. Posts made by healthcare professionals purporting to give medical or other advice will be deleted.

Q:     Is it appropriate to comment on the cases or behavior of other SD patients?
A:     Only in response to their questions or posts, otherwise no. Please respect the right of all patients, particularly third parties, to privacy about their case.

Q:     What name should I use when registering on the bulletin board?
A:     We recommend that you provide all or part of your real name rather than using an anonymous 'handle'. This is what most of our participants have chosen to do. Experience has shown us that people prefer to deal with others in good faith, and this is easiest when readers know who posters are. However the NSDA and the moderators are not responsible for verifying the identity of any poster.

Q:     Can I use more than one username?
A:     Please use only one username - to avoid confusing our readers. If you change your mind about your first choice of username please contact the moderators.

Q:     What is my e-mail address used for when I first register?
A:     The software sends you an authentication e-mail (using the webmaster's address) with a link for you to click on to verify that you have read and agree to observe the BB rules. By registering on the BB you agree to supply your email address to the NSDA for a one-time contact from the NSDA On-line Support Group. You may opt out of the NSDA On-line Support Group mailing list at any time after this contact. Please ensure that the moderators are advised of changes to your e-mail address so that you can be contacted about your posts if necessary.

Q:     How can other users of the bulletin board contact me?
A:     If you would like to provide other users with your email address please include it in the body of your posts. In most cases your browser software will make it an active link that readers can click on to email you.

Q:     Is advertising allowed?
A:    Advertising of proprietary products or services is not allowed on the bulletin board, but you may mention the name of a product or service that is SD-related and that may have helped you, and discuss your experience with it. The moderators may also delete or modify posts that are plugging a particular product, service or personal theory. In such a case the moderators will take into account the poster's previous posting history, and the persistence and level of insistence of the posts.

Q:     Is it appropriate to make posts about politics or religion?
A:     Politics and religion do not mix, and neither do politics, religion and spasmodic dysphonia. Our members come from a wide variety of backgrounds, and many may not share your religious beliefs or political views. Messages of support for others are always welcome but should not have a specific religious or political content. Please respect the diversity of religious beliefs or lack thereof among fellow bulletin board participants.

Q:     What kinds of links are allowed?
A:     Links to commercial and healthcare providers' websites will be deleted if the emphasis is on selling/advertising the product or service rather than providing useful patient information. Links to websites that misrepresent the actions and policies of the NSDA may also be deleted.

Q:          How do I look for posts about topics that may have been covered previously?
A:          Most of the people who participate in this board knew little or nothing about SD before being faced with it in themselves or a loved one. So, newcomers tend to ask very basic questions. In addition to newly diagnosed patients, the BB community contains people who have lived with SD for many years. We don't have all the answers but we do have a wealth of experience about coping with the condition. You may wish to search recent posts to see if your question has been asked before, or to get other perspectives. Click on the "Find" link at the top of the bulletin board page and you will activate the search function. Older posts may also be searched by following the "Archives" link.

Q:     What other sources of on-line information and support are there about SD?
A:     There is a lot of information at the NSDA website. You will also find support links and contact information for the NSDA On-Line Support group at http://www.spasmodic-dysphonia-support.org/