I know Celia

Ask any stranger on the street about heart disease/cancer/insert horrible but well-known disorder and you will get a similar response.  Eyes narrow, mouths turn down, heads gently nod.  Often they'll begin to tell you about the neighbor's child with autism, their own mother with breast cancer, their uncle with a failing heart.
Ask the same stranger about Batten Disease and heads tilt, eyes go wide and shift left then right, shoulders shrug.  They might ask you to repeat the question, to spell the word.
Batten Disease is faceless. There are no infomercials on late-night TV.  No weekend telethons.  No spots on the evening news about (insert someone famous) fighting Batten.
Pharmaceutical companies don't know about Batten Disease either.  Scientists count bodies to quantify cost.  And Batten is too rare, too unprofitable.

Batten Disease is little known in medicine, and in general, and it's underfunded in research. 
Maybe we're just asking the wrong question.  The question is not whether you know anyone with Batten Disease.
 
Do you know Celia?

Andy