Group, just a word of encouragement for anyone contemplating going to the NIH for the study. I went for 5 days in June and believe it was well worth the time. I was treated very well while there and was able to learn more about this condition from Dr. Druey and his staff. He also then helped me with my doctors after I had another episode(my second) on July 10th. I was also then able to have blood sent to NIH during my next episode. My second episode was much less problematic since we knew what we were up against(or at least it seemed to work out that way). Dr. Greipp assisted by making/taking calls from my us and my doctors, as did Arturo and Dr. Druey. In regards to the NIH visit, the tests were not too uncomfortable and well worth the opportunity to learn and contribute to finding out more about this condition. The idea of helping the process along also gave me a great feeling of accomplishment in supporting this community and the community of other rare diseases. Thanks also for Arturo as he came to visit me while I was there. If you can, I encourage you to volunteer to go to NIH as soon as you can! Thanks, Marc