I am finally confirmed to be seen at National Institute Of Health in Maryland on December 14. My wife will be going with me. We are both excited to see what can be learned about this mysterious condition. I know some of you have already been. Now it is my time to be a lab rat.

On behalf of this SCLS virtual community, thank you very much for your willingness to become a "lab rat" for a day or two. You will be interviewed by various scientists and then you will be asked to donate blood, and blood components, for scientific investigation. The procedure itself is pretty painless. You will also have some of the most in-depth conversations about SCLS and about cutting-edge treatments you will ever have, and since it’s all free of charge, you’ll feel like you’re finally getting something from the government for all those taxes you pay! (In fact, you'll even be getting a modest check in the mail for your blood donation!)

This will be one of the few good hospital visits most of us who suffer from this will have.

I was really amazed at how well NIH takes care of both the patient and caregiver. Procedures scheduled conveniently & guides provided to get you to each (the place is huge!), activities for families, free time to explore the campus - and room service! My mom and I were there for a week, very comfortably. Hope all goes as well for you-