wanted to give the group an update on some news we just received. Another child has been diagnosed with SCLS in our state. We finally have a Dr at the children's hospital who will follow him and be our main point of contact. She has also received a grant to do genetic testing on our whole family and the other child's family to see what if any markers the children share in common. We will keep the group upated as we go through this process.

Thanks for sharing. That is very encouraging that they are investigating further . Please let us know more as you learn.

Please encourage that other family (indirectly through the common doctor) to contact Dr. Druey at NIH and to grant him access to information, because he is putting together a first survey of SCLS in children, and since there are so few cases, every one really counts. I presume that you are in touch with Dr. Druey already; otherwise, the same request goes for you, of course.

This is wonderful news. Thank you so much for sharing and I look forward to your updates.