nephew has DWS and is an encouragement to others.
In April “Dandy Kids” screened before members of Congress in DC to gain additional support for H Con Res 163 which would ask the (NIH), National Institute of Health to appropriate funds for research on Dandy Walker Syndrome and Hydrocephalus. On June 26th H Con Res 163 went to the House floor for a vote with 105 bi-partisan co-sponsors and was unanimously passed. The efforts of this Resolution was that of one family and their perseverance after their son Ryan was born with DWS. Eric and Andrea Cole led the charge lobbying on the Hill, which is a lot for anyone to endure.
This H Con Res 163 does not lock in a specific amount of money for research; it only suggests that the research is warranted. “I receive numerous calls and emails weekly if not daily asking for