CCHS, also known as “Ondine's Curse,” is a rare and harsh neurological syndrome that affects 20 people in Israel and some 1,200 around the world. The syndrome primarily causes those affected to stop breathing while they sleep. Some of those who carry CCHS also have difficulty breathing while they are awake and must rely on a respirator 24 hours a day. Most of those who have the syndrome are forced to use invasive respirators and must undergo a tracheotomy, surgery that creates a breathing hole in the neck, when they are only a few weeks old.In addition to the dramatic breathing difficulties, the syndrome can also affect other parts of the body, including irregular heartbeat that requires the use of a pacemaker, problems in the digestive system accompanied at times by Hirschsprung disease, difficulties regulating body temperature, vision issues, epilepsy and seizures and even cancer. Yad La Neshima was created with the goal of advancing research in Israel and around the world into the syndrome and with that to try to allow our children to live securely, without relying on a respirator and without the threat to their lives hovering over them every day.