My links to the right are getting very long, but I wanted to add these links to CRS/SA message boards. Meeting other parents and also adults who have the condition helped me so much in the beginning, and we continue to share information every day that is so helpful. There was a pretty bad mesage board on MSN when I first had Jordan. I would stare at the images on there at 4 am while holding him when he wouldn't sleep. It was scary to see those black and white images of children with the condition that he has. Their eyes were blacked out for anonymity, somehow making it worse. I know it was for privacy, but to me, it was just more impersonal and scarier.
But things have progressed a lot since then, and the following yahoo message boards have been nothing but helpful to me. I can't imagine doing this without talking to other people who actually know what CRS/SA is!!!
These ones are the most active:
caudalregressionsyndrome
Sacral_Agenesis_Australia (this is a new group that is somewhat active, and they do accept Americans!)
These have very few postings, but it's good to join all of them just in case:
caudal_regression
SacralAgenesis
sacralagenesis2
These are some related message boards.
clubfoot
Warning: The clubfoot boardhas members who mainly believe in nonsurgical clubfoot methods. These do not always work for kids with CRS/SA.
LMC-TCS
Not all people with CRS have tethered cord, but it's good to know about the condition and be on the lookout for it.
I also find it very helpful to be on some spina bifida boards. Because SB is much more common, the groups have a lot more postings usually. And of course, many of the bladder, spinal, and lower extremity issues are very similar between CRS and SB.
InternationalSpinaBifidaSup...
Spina Bifida Parents List: This one is very active and has great members with great information and advice.
Add Yourself to the ListServ:Send an email to: SBParents-on@lists.sbaa-communities.org. Leave the subject line and the body blank.
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