Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic condition which results in an abnormal development of the body’s automatic nervous system in early fetal life.

Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic condition which results in an abnormal development of the body’s automatic nervous system in early fetal life. The main consequence is a failure to automatically control breathing, which is always present during sleep, but may occur in some individuals when they are awake.

There are thought to be over 100 affected families in the UK.

In 2017, Managed 24/7 sponsored a charity golf day for CCHS Support, a charity the cares for and supports children who suffer from a serious condition. During the evening presentation Adam Kirby, Managed 24/7 Business Development Manager, got to meet one of the young children who suffer with CCHS and learned about what they go through. Adam was very moved by what he learned that night and decided that he would like to help.

Adam signed up to a cycling event in the New Forest and having never ridden a road bike before, it was quite a challenge that lay ahead. With only 3 days to go, Adam managed to get hold of a bike through the Managed 24/7 cycle to work scheme and with no practice, he set off at 3am for the New Forest. Adam completed the challenge in good time and maintained a good average speed throughout. Aside from some sore legs and a puncture 100 yards from the finish line, it was a great race and we are all very proud of him.

Adam is raising money through Justgiving page and is working towards his target amount raised. He appreciates any support in hitting his target by following this link.

For more information on Congenital Central Hypoventilation Syndrome (CCHS) please see here.