Jansen’s Journey – A RAREly Told Stories film

In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, on how to tell your rare disease story in video. We were so pleased with all the excellent short documentaries that resulted from this session. Three of the films will be screening at our RARE Advocacy Summit in Kansas City this September. Here’s a look at a film on Syngap1 by Suzanne Jones.

“Our family felt called to make Jansen’s Journey to both spread awareness of SYNGAP1-Related Disorder (SYNGAP1) and shed light on our lengthy diagnostic journey. We decided to make the film having viewed another SYNGAP1 movie (Celebrating Caren), which was featured at the first SynGAP Research Fund (SRF) fundraising gala. We too decided to partner with SRF, a patient advocacy group dedicated to supporting SYNGAP1 families and investing in research to accelerate the development of SYNGAP1 treatments. In doing so, we hoped that sharing our story when hosting a local SRF fundraising gala would be impactful as we tried to rally our community around our own fundraising efforts.

A scene from the film Jansen’s Journey

Deciding on shoot locations and b-roll questions was our focus leading up to the shoot day. Once we selected locations, the venues were generous about allowing us to film, which we much appreciated. Post-shoot, digging through the b-roll copy took considerable time. But it was important to us to impart as much of our story as possible, as well as keep our movie short and sweet.
As Jansen’s Journey is viewed, we hope that people witness the love we have for our daughter and understand our desire to help her and others grappling with rare disease.”

– Suzanne Jones

Watch her film Jansen’s Journey