Dr Kirk Druey and his very qualified team of experts are researching SCLS at National Institute of Health in Bethesda, MD (right outside of DC). I was the 3rd person to participate in this study this past week as an inpatient for 4 days. I have Dr Druey's permission to inform all of you about this and to give you contact information if you are interested in participating. One of Dr Druey's nurse practitioners Wei, is the contact person and she can be reached at firstname.lastname@example.org.
The SCLS community is very blessed to currently have a study at NIH-thanks to Arturo's advocating for us.
Please consider contacting Wei to participate. If you have any questions feel free to contact me directly at email@example.com.