Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Hi Gang, I've been reading posts and answering when I can. I'm still in the halo and I hope the instrumentation will be available in a couple of weeks. Chip (from WACMA) called me this past week and we talked for quite a while. One of the things we discussed was all of the major on line support groups linking together. I need to contact most of them yet, but have been in touch with Dorothy Poppe and her new group. My hopes would be if someone finds one of the groups, we will have links to all on every site. This will make it easier for people looking for information and support. Eventually I'd like to have informational video on site as well. Lots of leg work before this all comes into play. Here's a list of sites that you will find very informational, they are from the US, UK, Spain, Italy, and France. It is in hopes that we can offer assistance on a world wide basis. http://www.theannconroytrust.org.uk/ http://www.conquerchiari.org/index.htm http://www.afacpa.org/ http://www.pressenter.com/~wacma/ http://web.tiscali.it/siringomielia/ http://www.csfinfo.org/ http://www.apaiser.asso.fr/cgi-bin/index.php http://www.asap.org/ Kathleen Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed with craniocervical instability, Ehlers Danlos, and Tethered Cord Syndrome, surgery for everything but EDS since 1998. http://chiariconnectioninternational.com/ Quote Link to comment Share on other sites More sharing options...
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