The brave and kind little boy you see in the pic is our Carlos, or as we use to call him, Carlitos. A few months ago he was diagnosed with syndrome called Coffin-Siris Syndrome, caused by a mutation in a protein (ARID1B). This syndrome affects almost every aspect of his life - speech, communication, learning, understanding, and motor skills - and creates huge barriers on his way to independent and full life.

Technologies that can correct Nour's genetic problem already show enormous potential in comparable syndromes. They may immeasurably improve his life and allow him to realize so many more of his future dreams. These technologies require adaptations and experimentation to prove their capability for Nour's mutated gene. It is a complex and expensive endeavor.

The foundation we started, together with some of the best minds in the field, have already taken the first steps - identifying the appropriate modalities, finding the right researchers to make the adaptations, and funding the initial stages of development.

Now we are turning to you for help to take this forward and quickly create treatments for Nour and thousands of children with the same syndrome.

To be honest, this disclosure of our personal life is very uncomfortable for us, but we owe it to our Nour. The simple truths are that we cannot take this journey alone and that no one will take it for us.