I have to throw this out there to the group... Where does the money go? I have found that all research in the Ross Lab book and the blue book out of Wisconsin is old. I know that PGC funds events such as the big conference, but what can we, as a group, do with the money? One thing that I was trying to research is: what is the machine that actually tests the galactosemia levels in foods? What if we, as a national group, could fund one of those to run tests? Would that be worth money?
Also, PGC raises money for research. What kind of research? One of the doctors at the conference was talking about how all of the neurological "damage" was done pre- and neo-natally. How does this help our children? Is there a place to donate for research for a galactose binder (free vs. bound galactose)- is it even a possibility? Is there a place that researches some sort of treatment or management of galactosemia?
Patrick and I are going to Ireland in October. It so happens that one of the biggest galactosemia research hospitals in the world is in Dublin. I am working with my sister and brother-in-law to get an appointment with a doctor or nurse there to find out about their research.