Help us support children with Congenital Central Hypoventilation Syndrome (CCHS)
100% of donations go directly towards the mission of discovering, pursuing and creating treatments (and cures) for CCHS sufferers. Not a penny into administration or staffing.
THERE IS NO CURE FOR CCHS. BUT WE ARE MAKING PROGRESS TOWARDS ONE EVERY SINGLE DAY.
We are a foundation and charity-funded organisation working Relentlessly to make breakthroughs in CCHS research, get treatments faster and find a Cure. 100% of donations go directly towards the mission of discovering, pursuing and creating treatments (and cures) for CCHS sufferers. Not a penny into administration or staffing. Inspired by the birth of a beautiful boy called Casper, born with CCHS and the most complex case of Neuroblastoma (a Cancer) Great Ormond Street Hospital had ever seen.
Children with Congenital Central Hypoventilation Syndrome (CCHS) require lifelong mechanical life support via ventilation to keep them breathing during sleep, and in some cases, when awake.
Also known as Ondine’s curse, it is a rare disease, hallmarked by a failure of respiratory drive due to an inability to sense oxygen or carbon dioxide levels in the body. CCHS is not just a respiratory disease. 50% of children with specific types of CCHS are born with or go on to develop tumours such as Neuroblastoma (a type of cancer).
