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.
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I think we should raise money for some of our own projects as suggested but, I also think that some of the funds should still go to the PGC to help out with conferences and some of the research that they help fund.
Re: fundraising. Remember that if we raise funds it has to go through PGC becasue we are not a 501 c 3. This could put a damper on the control of the $$. If we wanted to raise $$ for a specific item or research dr. we might have to run things a little differently. If we simply raise the $$ and purchase something or give it to someone who is not a non-profit already, we will have to pay taxes on it. This isn't to say we can't find something we want to support and figure out a way to do. If we have a plan----anything is possible.
I don't really have anything specific in mind, but I am just curious as to where the current money goes and where our hard work would go. There isn't really anything specific on the pgc site.
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