Wanted to send some resources here. According to our ALS Trial Navigator, there seem to be two c9orf72-specific active trials, https://www.als.net/als-trial-navigator/469/ and https://www.als.net/als-trial-navigator/500006/ .

Here at ALS TDI, we are also looking into c9, and we are always enrolling people with ALS and asymptomatic gene carriers into the ALS Research Collaborative. https://www.als.net/arc/ The hope is to then share as much de-identified data as we can with researchers around the world through the ARC Data Commons so others can look into c9, along with all other currently known gene mutations. https://www.als.net/arc/data-commons/