Global Genes Project

adge1119

I was lucky enough to attend their gala and patient advocacy summit last Thursday & Friday in California.  All I can say is AMAZING.  Start to finish I learned so much and it inspired me.  If no one has gone and "liked" them on FB or looked at their website please do.  It is a great organization really pulling together the rare disease community.  Seeing all of the families who have worked so hard to fund research and gather support for their children, themselves, and others was/is beyond words.

Also check out their trailer for the documentary "Here.Us.Now".  I also saw that and it was superbly done.

And now time to start my own non-profit!