Featured Client Story

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 Pacer because Elise would get at least two infections a year. Elise was implanted on November 14, 2012 at the Tulane University Hospital by Dr. Steiner.  Six weeks after being... Read More

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. Louis, MO www.chaseparkplaza.com You can register for the conference at www.cchsnetwork.org   The CCHS Network, Children’s Hospital, Los Angeles, Seattle Children’s Hospital, and the European Union Congenital Hypoventilation Syndrome (EUCHS)... Read More

Attending Medical School With The Avery Diaphragm Pacer

In 2011, Cassandra started having several cases of pneumonia which led to a diagnosis of hypersensitive pneumonitis. Even though the doctors aren’t 100% sure of what Cassandra had, they referred to it as Acquired Central Hyperventilation Syndrome. Cassandra was sent to Uppsala Sweden because the doctors there are very experienced in treating those with diaphragm... Read More


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 was mechanically ventilated at night while asleep until she was paced at age 18. During a sleep study conducted in late 2015, it was discovered she was suffering from Obstructive... Read More