We recently took a trip, not to be confused with vacation, to the National Institutes of Health in Maryland to participate in a research study. This study is for CDG’s and will give researchers knowledge to *hopefully* help people in the future. The first thing you will read when consenting to the study is it is voluntary. It’s voluntary and you can withdraw at any point. It also clearly states that you may receive no benefit from taking part in the study. Most of this I disagree with. It may be voluntary but it’s necessary. It’s necessary for children like mine to participate. Without them, there is no study. Without…