In response to those of you who are still trying to decide on whether to go to Bethesda for the NIH protochol research study on SCLS, I highly recommend it. In my case it was four days of pretty intensive interviews, blood draws, heart MRI's and a new procedure using infrared photography to view the capillaries and measure skin temperature changes. It was also an opportunity to meet with Arturo face to face and get one patient's perspective of how to meet the challenges of this very perplexing disease. The visit also gives you and your spouse or other loved ones a chance to ask their questions as well as well as your own of Dr. Druey and his staff. In my case, it was helpful to confirm that I did indeed have SCLS and was able to have all my medical test results sent to my local doctors. If you decide to go, be sure you understand the NIH's travel expense reimbursement policies, room arrangements for you and your spouse, etc. so there are no surprises. The people at NIH were very accomodating, treat you very well and the food is pretty good for hospital fare. If any of you have specific questions or concerns, the people at NIH can send you an email with tons of information about the research study, etc. One other note; the security to enter the campus is extensive so be prepared to unload your vehicle and send all your personal belongings thru scanners. But the bomb sniffing dog is friendly. Good Luck.