Client Profile

Spinal Cord Injury and Breathing

There are an estimated 288,000 people living with spinal cord injuries in the United States alone, with an estimated 17,700 new cases each year. In many of these cases, breathing assistance is required. There are multiple options available, though many people, including physicians, are not always aware of the options that are available. For quadriplegic... Read More

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 some, this means being dependent on a ventilator 24 hours per day which requires carrying one with them at all times. This can severely limit the amount and types of... Read More

Diaphragm Pacemaker for Teen Featured on WSB-TV Atlanta

Fourteen year-old Sedarius was recently featured on WSB-TV Atlanta as the first pediatric patient to receive surgery to implant a diaphragm pacemaker in the state of Georgia. See his story below: Sedarius was diagnosed with CCHS when he was eight years old, and required a tracheotomy and ventilator to breathe while he slept.  The Avery Breathing... Read More

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