Raising Money to Raise Awareness

KBG is a rare genetic disease with broad phenotypic effects in neurological and connective tissue.  Many case studies have an n of only 1-3 individuals with affected families and their supporters gathering information by crowd sourcing on social media.  There is a lot to be learned about this condition including how many people are affected globally (~500 documented to date).  While the campaign does have monetary goals, it is also to raise awareness of this condition.