Success Stories

Avery’s Ballerina

Elise has Congenital Central Hypoventilation Syndrome (CCHS). Shortly before her ninth birthday, Elise and her family were told by her doctor about the Avery Diaphragm [...]

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. [...]


Marissa, a twenty-seven-year-old nursing student, has been pacing since 2007. She was diagnosed with CCHS at three weeks old. She had a trach and [...]


Nico is a 28-year-old man with CCHS living in New York, USA. He has been pacing since 2006. He earned his MPA in 2013 [...]


Anna was born in Denmark in 1996. She was diagnosed with CCHS at 11 months old. Before getting the pacers, she used a VPAP [...]

Shannon & Lauren

Shannon and Lauren were born in April 1987, and are one of only two known sets of identical twins born with congenital central hypoventilation syndrome. [...]


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), [...]