Candle in the Dark ‘managed by the King Baudouin Foundation’

Why was the fund set up and by whom?

Raphaël has a rare genetic eye disorder called Leber Congenital Amaurosis (LCA) that causes progressive blindness. The diagnosis was made when Raphaël was just 3 years old, and his parents were devastated to learn what was going to happen to his eyesight. They decided to take positive action for their son, and other children like him. First, they wanted to find out as much about this disease as they could, and about the prognosis for those affected by LCA. It became clear to them that gene therapy offered a future not just for their son, but potentially for all of those who face the prospect of blindness due to LCA. They learned that, despite initial success with gene therapy, current research into inherited retinal diseases is receiving little financial and commercial interest, which led them to set up the Child Vision Research Fund. The Fund aims to support research efforts to increase the understanding and treatment of early-onset retinal diseases leading to blindness. In addition, it wants help raise public awareness of the condition.