The purpose of the American Syringomyelia & Chiari Alliance Project (ASAP) Electronic Communities is to provide a means for those affected by syringomyelia, Chiari malformation and related disorders to positively support one another, share personal experiences, discuss firsthand knowledge related to treatment, testing or other disease-related information.


ASAP Electronic Communities (listserv, and other ASAP electronic medium) are comprised of friends and members of ASAP. The views represented here are not necessarily those of the ASAP staff, Board of Directors or Medical Advisory Board. Keep in mind that information posted is from fellow participants, not professional advice from physicians, attorneys or financial advisors.
By participating in the ASAP Electronic Communities, you, the user, agree to the following posting standards. You will not post:

  • material that is knowingly false and or defamatory, intentionally inaccurate, invasive of a person’s privacy, or otherwise in violation of any law;
  • language that is considered abusive, threatening, vulgar, hateful, harassing, obscene, profane, sexually explicit, and or adult in nature;
  • ‘flames’ or other personal attacks of any kind;
  • references to race, ethnicity, creed, religion or gender preference;
  • ‘flames’ or other personal attacks of any kind;
  • political or religious debates;
  • links that are pornographic or adult in nature;
  • advertisements, promotional materials, chain letters, or spam;
  • copyrighted material unless you own the copyright or have permission from the owner;
  • third-party medical information (specific diagnoses or treatments);
  • last names, addresses, email addresses or phone numbers of other individuals;
  • your own phone number;
  • solicitations for financial assistance for yourself or others;
  • promotions for fundraisers except those which benefit the American Syringomyelia Alliance Project, Inc.

You remain solely responsible for the content of your messages, and agree to indemnify and hold harmless this community, ASAP, and its agents with respect to any claim based upon transmission of your messages.

We, ASAP, reserve the following rights:

  • We will make every effort to see that participants abide by the above policies. We reserve the right to edit, delete or stop the posting of any message for any reason or for no reason whatsoever.
  • We reserve the right to reveal information about you in the event of a complaint or legal action arising from any message posted by you.
  • We reserve the right to pre-screen messages before they are posted.


ASAP may take the following steps if it determines an infraction has been committed.

1st infraction: Written notification/warning will be made stating that the post in question violates the above stated policies and further postings of this nature may result in suspension or removal from the Electronic Community.

2nd infraction: If a second offense is committed (either in follow-up to the original post or as a separate incident), a notification will be sent stating that posting privileges will be suspended for a period up to seven days. Additionally, the individual will be warned that further posting of that nature can result in permanent removal from the Electronic Community.

3rd infraction: If a third offense is committed, the individual will no longer be welcome in the Electronic Community.

If you read a post which you feel is in violation of these policies, notify the moderators at asapmod@asap.org. If you would like a moderators decision reviewed, contact the office at info@ASAP.org and they will give it to the proper authority.