Support & Resources - Online Support Groups

Please read our Electronic Community Policies.

Facebook Pages

Social media is the social interaction among people in which they create, share or exchange information and ideas in virtual communities and networks. One social media site used commonly by billions around the world is Facebook, which was opened to the public in 2006. ASAP chose to take advantage of the opportunity to reach those who are seeking help with Chiari and/or Syringomyelia and related disorders.

ASAP has two official pages, one is open for the public while the other is a closed page so only members can see post. The closed page allows for anonymity. Several other pages have branched off to deal specifically with individual needs, ie ASAP Parents Page, ASAP Kids for a Cure, Syringomyelia Support, etc.

https://www.facebook.com/cmsmasap ASAP’s main facebook page which is open to the public. ASAP post all events etc. to this page.

https://www.facebook.com/groups/AmericanSyringomyeliaChiari/ ASAP’s closed facebook page. This page is designed to support each other and do so in a more private setting. Other facebook friends will not see your postings unless they are members of the page.

ASAP Community

Join our online message board. Share coping tips and find support from others who are affected by SM, CM and related disorders. Our message board is experiencing problems. We are working to correct the issue. Thanks you for your understanding and patience. We hope to resolve the issue as quickly as possible.

Listserve

If you have e-mail, you may join our free listserv which has been arranged through the University of Maine. You can send and receive messages from other members of the listserv. Subscribing is easy. Just follow these simple steps:

Send a message to: LISTSERV@lists.maine.edu

Leave the subject line blank. In the body of the message type only:

subscribe ASAP-L “full name”
for example: subscribe ASAP-L Jane Doe

The listserv is also available in digest form. All the messages for the day will be e-mailed at once. Digests reduce the amount of e-mail you receive from the list but it is not as timely as non-digest form. To get this format you must first join the list using the above commands.

After joining, send another message to: LISTSERV@lists.maine.edu

with the following command in the message body.
SET ASAP-L DIGEST

You may leave the list at any time by sending a
SIGNOFF ASAP-L
command to LISTSERV@lists.maine.edu

Before joining, be sure to read our Electronic Community Policies.

If you wish to receive the digest format after joining, send another message to: LISTSERV@lists.maine.edu

with the following command in the message body.

SET ASAP-L DIGEST

You may leave the list at any time by sending a
SIGNOFF ASAP-L
command to LISTSERV@lists.maine.edu