Thank you Jeff for spotting the video of this presentation that Dr. Druey made at NIH on 9/15/2010!
It is full of medical and scientific jargon, but it does give one an idea of how (unfortunately) little we know about the basic biomedical aspects of SCLS -- despite Dr. Druey's valiant efforts over the past 2 years to research the cause of our disease through sophisticated laboratory work.
I found that he still gives too much credit to treatment with theophylline and terbutaline and too little credit to successful prevention with IVIG infusions, but as more and more of us receive IVIG and experience the beauty of episode-free lives, I suppose he will give more credit where credit is due, and do more research on its likely immunological roots.
If I may, the more direct link to the video is http://videocast.nih.gov/Summary.asp?File=16111, and the more precise point at which to catch it is to set the cursor to minute 29 on the left-hand scale, thereby skipping the presentation before Dr. Druey's.