Well, I have finally found a place where I can speak my mind! In our 2 year work with Kuvan, we have been met with nothing but negative treatment from the National PKUNews. I worked with Virginia Schuett to the best of my ability but have been rejected one too many times. My concern is that the PKUNews is supposed to be "promoting exchange of information about PKU." That is not being done and I SIMPLY want to make that statement. Parents, patients and practitioners needs to know that the National PKU News is no longer a clearinghouse of ALL things PKU. Many are quite aware of this fact but many new parents will be receiving the newsletter as part of packages for new parents. I am saddened by this. I appreciate what I have enjoyed from the PKU Newsletters. I will go on to describe the factual situation that led me to this blog. I am not embellishing, simply retelling. I have not received anything from BioMarin regarding this blog. They do not even know of our situation. The site has provided a place where I can tell the whole story and not have parts omitted and/or forgotten by Virginia Schuett. To start with, my son, Zachary, is almost 15. He has been on Kuvan since November, 2007. He is a responder. In a unique way to enter the PKU world, we were presented with Zachary's file and information when he was 5 years old. He was in state custody and needed a family. We were actually given the choice of taking this child with PKU or waiting for another child. After a quick PKU101 provided by the local clinic, we realized it was no big deal to us and said yes. The adoption was made final in September, 2000. I can honestly say that PKU has never been one of the larger issues in his life. When Virginia Schuett sent her email looking for kids to add to her Newsletter, I contacted her about Zachary. While a bit older than most of the kids in the newsletter, I felt that he was finally in a good place and could talk about his PKU. Ms. Schuett agreed to putting Zachary in the Kids of the Month section. As we wrote his story, we all agreed that his taking Kuvan was important. We respected Ms. Schuett's disdain for Kuvan and did not want to make an issue. So, we simply wrote one sentence, "I am taking Kuvan and it is working for me." The rest of his story was dedicated to everything else about his life. When the Winter, 2009 edition came out, Zachary's story was in the Newsletter MINUS that ONE sentence! Virginia apologized only for not telling me she was omitting that sentence. She promised to put him in the Fall 2009 Newsletter as she had already filled the Spring newsletter. When she put out a call for kids for the newest newsletter, I checked with her on putting Zachary into it. I received this " I am very sorry to say that I had completely forgotten about redoing the story and coincidentally just yesterday filled every space on the kidÃ¢â‚¬â„¢s page." So, I am at a loss. I feel that I was more than polite. I did not run to the Listserv. I looked to her for ideas on how to fix this and followed what she offered. I guess by publishing this, I feel like there is a place where the whole story was told. If there is any concern about the facts, I can also publish copies of every email received by her and sent by me. I want to know about everything out there- good and bad. I want to know about any bad outcomes from taking Kuvan. I want to know the good in taking Kuvan. I want to know everything about every drug out there for PKU. I want to be able to get as much information as possible so I can make an individual decision- just like every parent does. I read her articles. I listened to the doctors and dieticians. So, when we sat down to make this difficult decision, we had the facts. She wrote this, "As far as providing a balanced view of Kuvan in the newsletter, I think that the positive aspects of Kuvan use are ones that most people can easily find out about elsewhere, and my voice is not needed to join the chorus." Where do we look? If we cannot look to the National PKUNews for all information PKU anymore, where do we go?