Adam was diagnosed with NPC in 2006.  Since then his family has been fighting for a cure.  Of recent, his classmates at Freedom High in Bethlehem, PA chose as the homecoming king.  You can read more at:

http://www.foxnews.com/health/2016/09/25/pennsylvania-teen-with-rare-brain-disease-becomes-homecoming-king.html

You can learn more about Adam and his family at The Race For Adam