Success Stories


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 [...]

  • diaphragm pacer skiing

Skiing with the Avery Diaphragm Pacemaker

Those diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) would typically require Positive Pressure Ventilation (PPV) in order to regulate breathing, by utilizing a tracheotomy. For [...]

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 [...]


A few weeks after Cash was born in January 2008, he was diagnosed with a breathing condition known as congenital central hypoventilation syndrome (CCHS), [...]