Sorry we took awhile to write a new blog, we had an exciting adventure that we were on. Nick was asked to be a part of the natural history study for his disease FOP. It is really exciting because they are doing some great research and hopefully this will help a lot of people.
They had Nick come out to UCSF to have all the baseline testing done. Since Nick has a hard time flying because he doesn’t really fit on a plane and then once he arrives it is very hard to find transportation, we drove. Lori flew in on Friday evening, since she wanted to stay and work, and didn’t really care about a long drive.
We left Wylie on July 15, 2015, just Nick and I. We planned to make it in three days with stops in Albuerquerqe for the first night and Barstow the second night. We didn’t want to push it because it was almost a 1900 mile journey.
We made it to SF on the 19th and checked into our host hotel, The Hotel Kabuki. It was in Japantown so there were a LOT of asian choices, we just didn’t get a chance to try too many of them.