0
RegistryNewsletter
0

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.
We have two articles about this movie:
- You can read an interview with Jess abut meeting Caren at the filming.
- Nancy wrote an article about Caren's journey as well.

Caren's story was featured in The SandPaper publication.

SRF is grateful to Executive Producer illumina for their support of this project.


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.

If you would like to know more about Caren, see her Wednesday Warrior page.

~Accolades~

This is the trailer for Celebrating Caren

This is the full event we did to launch
Celebrating Caren there is a great Q&A after the movie

Movie dubbed in Spanish

Movie dubbed in French

Movie dubbed in German

German subtitles burned into the movie

Russian subtitles burned into the movie

© Copyright  2018-2021 Syngap Research Fund  | All Rights Reserved | 
Privacy Policy