Overcoming Movement Disorder

Bertrand enjoyed the fireworks for New Years Eve in Park City! We captured a little laughter (and hiccups) and his sister being sweet: ...

Apologies for the delayed update! Bertrand got out the hospital just in time for Thanksgiving, and he's recovering rapidly in his natu...

Bertrand had a rapid drop in O2 on Day 4, which sent him to the ICU. It took 35 liters of oxygen to stabilize his O2.  ("A leafblower...

Bertrand is on Day 3 of hospitalization with a severe respiratory infection. It's become very clear having met other NGLY1 families th...

The NIH-backed Undiagnosed Diseases Network (UDN) is launching today! If you or someone you know has been on a challenging diagnostic ...

Life continues to move at a pace faster than we can process. Rest assured that despite our silence, good things are happening.  (In fact, ...

Bertrand is back in action with his intensive therapy!