When we returned from the Symposium, I was so eager to share all the excitement and wonderful experiences along with the knowledge we gained at this meeting. I wanted to get a special, early issue of the Newsletter ready within a couple months. But here I am as usual, trying to get the fall/winter issue out before the end of the year. Maybe this issue will refresh the memories of those who attended so they can feel the wonder of it all again.
I do hope this Newsletter conveys some of the atmosphere of Symposium '98. The families were thrilled to be together and to gain new insights and share mutual feelings and concerns. However, several of the adults with MSUD were disappointed. They were too mature for the teen activities and found some of the talks too boring. This group of adults is increasing - good news - and we need to consider their needs. You adults with MSUD, send in your ideas for the next Symposium. You are a very important part of these meetings. The Personal Perspective Panel was one of the most appreciated parts of the agenda. Don't sit and stew, write your views for the Newsletter.
Rick Finkel, with Applied Nutrition Corp., made an interesting observation at the Symposium. Rick attends many conferences to introduce his products. He told me our Symposium differed from the conferences of PKU and other diseases in that we are such a social group. He was impressed that the interaction of the families was so intense, that it was difficult to get the people to quit talking and back into the conference room after breaks.
We were thrilled to have so many Spanish-speaking families at this Symposium. Maria English from the state of Washington sacrificed her time and served graciously as a medical translator for those who couldn't speak English. These families are so scattered (even from as far away as Chile); it was a joy to learn to know them and to give them the opportunity to participate.
I should explain a little about the term Maple Syrup Disease (MSUD). Several families said their children were embarrassed by the word "urine" in the name of their disease. So the Clinic for Special Children in Pennsylvania chooses to use the name MSD.