Success Stories


Yonathan with his Avery diaphragm pacer   Yonathan was born in 2004 and diagnosed with CCHS (Congenital Central Hypoventilation Syndrome) by two months [...]


Cash at age 5 Cash was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) and was given a tracheostomy as an infant. He [...]


Anna enjoying her freedom from VPAP on a hike Anna was born in Denmark in 1996 and was diagnosed with CCHS at [...]

Avery’s Ballerina

Elise has Congenital Central Hypoventilation Syndrome (CCHS). Because Elise would get at least two infections a year, her doctor recommended the Avery Diaphragm Pacemaker. In [...]

Shannon & Lauren

Lauren and Shannon with their children   Shannon and Lauren are 33-year-old identical twins living with CCHS. From birth to age 8, ventilation [...]

Leo Travels the World

Leo and his father on an adventure Leo was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). In 2015, at age 5, he was [...]

International CCHS Conference 2018

         5th International CCHS Conference: The Future is NOW Priorities, Partnerships, and Patient Voice When: June 20-23, 2018 Where: Chase Park Plaza, St. [...]


Nico enjoying life with his Avery Pacemaker Nico is a 28-year-old man with CCHS living in New York, USA. He has been [...]

  • sogi cchs


Sogi was born in August 1993 and soon after was diagnosed with Congenital Central Hypoventilation Syndrome, which was managed via mechanical ventilation. In the summer [...]