Celebrating Caren was released on Rare Disease Day 2021

In 2020, after recovering from COVID, Caren was given genetic testing. She was 64. She received an unexpected SYNGAP1 diagnosis. To our knowledge she is the oldest known patient in the US. Her story is remarkable, so we made a 15 minute movie about it.  Watch it now.

This movie includes Caren's sister Nancy, a SYNGAP mother Jessica and three doctors who have cared for Caren: Dr. Devinsky, Dr. Adams and Dr. Grigaux. You can read an interview with Jess abut meeting Caren at the filming.

This movie has automatic subtitles in  Spanish, German, Italian, French, Portuguese and Russian, all edited by SYNGAP families. Special thanks to Illumina who is an Executive Producer, we are grateful for them for their support and the genetic testing their products make possible.