The community rallied around Ronkonkoma’s own Emily O’Connor, 6, and her family for a fundraiser held last week at Gatelot Avenue Elementary School.
It was to raise money for Sanfilippo syndrome, the rare and fatal genetic condition in which Emily is afflicted. Funds generated will go to Team Sanfilippo, a non-profit medical research foundation started by a group of parents with the mission of funding potential therapies, and cures for this little known malady.
Read more here….http://sachem.patch.com/articles/fundraiser-held-for-ronkonkoma-girl-with-rare-genetic-condition