This has been in the works for a while and it is now getting close to being active.
The primary goal of this website is going to be to connect families all over the globe that have been affected by this illness. I believe that together we can become more knowledgable about the best treatment and care for our children. My hope is that we can come together as a community to support each other, education each other, and share research. There are still some details to work out but the website will be live shortly. If there is anyone that would like to help or has any ideas or suggestions for things they would like to see on this website please leave a comment and let me know.
The website will have a forum where we can all ask and answer questions, which is the most immediate need to most families right. I have more ideas that I would like to have happen on this site but will need more time to work on them. I have decided to get the website live as soon as possible to that we can start sharing information immediately, and the site will get more sophisticated as time goes on. Please stay tuned for more information.