If you have a child with Angelman Syndrome, this list is a MUST. I’m certain I could not have made it this far without the love and support and help from all these wonderful families.
To know you are not alone, that in itself is reason enough to join the list.
There is something healing about sharing your experience. Maybe healing isn’t the right word. Validating? Personally, to share the things I have been through, especially the negatives, makes it seem like there was more of a purpose, like if I can tell someone else so it goes better for them, then the pain it was for me is lessened or at least worthwhile. If that makes any sense!
And to share the positives. I’ve been motivated and inspired hundreds of times by the families on the list, that I want to share our good times with others too. And, TBH, most of my other friends don’t get it that Maddie’s accomplishments are *so* huge for her. I get that her personal development schedule is so different than other kids, its hard for them to appreciate her milestones.
Some of my best friends were found on this list. And some I have yet to even meet in person. (note to Jill – - I’m coming to see you!!! Eventually! LOL!)
What is a listserv? Its like an email group, messages go out to everyone who is signed up or the group/on the list. You can be an active participant, you can lurk, you can reply directly to other individuals without replying to the whole list, the list can really be whatever you want it to be, whatever meets your needs.
Listserv Sign-up
The Angelman Syndrome Listserv is a support and information sharing network comprised of parents, grandparents, aunts, uncles, siblings, friends, teachers and therapists, all people who care for or about a person with Angelman Syndrome. It is a place to share thoughts, feelings, ideas and to learn more about all aspects of Angelman Syndrome, from daily living tips to scientific and medical information. The Angelman Listserv currently has almost 300 families and individuals subscribed. The support and knowledge is unmatched.
To subscribe, just follow these simple instructions:
- Send a message to listserv@ucsd.edu
- In the body of the message type: add angelman-l (please note this is a lower case L, not a number one)
- Leave the subject line blank
- Send your email.
If your email program will not allow you to send a message with a blank subject line, you can accept the default subject or type <no subject> in the subject line. Soon after you send your request, you will receive a confirmation message via email and will immediately begin to receive mail!
If you have difficulty subscribing, please contact angelman-l-owner@mailman.ucsd.edu
