Last month we travelled to Mt Sinai in NYC to visit a leading researcher in CDG's. CDG stands for Congenital Disorder of Glycosylation. This is an aspect of Frances' Rare Disease. It is usually a deficiency or lack of specific enzymes or other proteins involved in the formation of sugar trees (glycans) and their binding to other proteins or lipids. We are lucky to have doctors like Eva Morava and Irena Muffels putting the time and consideration into the mechanisms of DHDDS. We hope these efforts over the years will progress to possible treatments or medications for those diagnosed. There are many areas to explore but this is an important one. Projects like these have been made possible by your continued support and we cannot thank you enough. Frances returned to school last week, and she is able to participate and is truly accommodated where she's at. We are currently in the process of delving into her glucose levels and diet options. We are tracking her symptoms weekly still, and also having her participate in active things that keep her body moving. Her moods are still like a rollercoaster at times, but we are positive this is also a part of her becoming a teenager. (Yes our baby has turned 13!) She continues to have absence seizures, and tremor, difficulties in coordination, but all in all at this moment in time she is doing well and not appearing to be losing skills. It's all we can hope for whilst we fund and chase future treatment options. When Frances cracks a joke or smiles with a side eye it is the best. Seeing her play with kids and dance around every morning in the bathroom keeps us going. We have a conference in Boston coming up next month over halloween. Another update to follow!