June 2nd, 2007

I just wanted to say what a great time we had on the cruise. Ashley had an especially good time, she was able to go and do with her friends that she met on the boat, they had two teen clubs for her and even opened the adult club to the kids for one alcohol free night. Jacob was in heaven, they had a great kids pool and an arcade that in size rivals arcades I’ve seen in shopping malls. They are were asking when we are going on another cruise on the plane ride home. I was very reluctant in the beginning about the whole cruise thing but I can say that I am now hooked. Not once did I feel like I was couped up or claustrophobic. The boat was so big and had so many things going on it that you would never know that you were one of 3600 passengers and 1200+ crew on board the boat. It is truly an engineering marvel.

I want to say thanks to the Make-A-Wish foundation and to Royal Caribbean. Without their generosity many families would not be able to participate in such great experiences. The treatment by all the staff and crew was first class all the way, the food was amazing, it was an awesome experience. The Make-A-Wish foundation sent a limousine to pick us up from the airport and to take us home. We were also given privilege boarding and were able to board first on the plane which was nice. We also were given a VIP package by Royal Caribbean that consisted of some nice RC trinkets and gear, a bottle of champagne waiting for us in the room and several activities scheduled by the Adventure Ocean coordinator that very few people get the opportunity to do.

Our favorite was the VIP time on the FlowRider, the surfing machine that’s on the boat. We had nearly an hour just with our family and it was a lot of fun. I have put up a photo album of pictures that we took during the cruise, you can get to it by clicking here.

Life is back to normal for a short time before we leave for Illinois for the annual ULF meeting. We are excited to see a special time slot just for CTX this year and look forward to everything that we will learn. By now most of the individuals in our small CTX community should have received the letter that we sent out stressing the importance of attending this years conference and it’s role in making sure that we continue to have access to CDCA.

I also wanted to remind everyone to please fill out and return the patient surveys that the ULF sent out several months ago. These surveys provide key information to the pharmaceutical manufacturers and play a role in the overall cost of the medication to the patients and families. These surveys are VERY IMPORTANT. Please fill them out and return them to the ULF ASAP!

That’s all for now.

Posted in Updates.