The Human Side of Research:Lori Hermstad and Erin Fleming, Illuminate Series.

The development of jacifusen (ulefnersen) began with families affected by FUS-ALS coming together to help bring attention to this rare form of ALS.

In this conversation, Lori Hermstad shares the lives and legacies of her daughters, Alex and Jaci, and the family’s extraordinary advocacy following two devastating ALS diagnoses. Erin Fleming, co-founder and COO of ProJenX and former Director of Research Operations at Project ALS, shares how Project ALS supported the Hermstad family and, alongside the ALS Association, helped fund the initial development of this investigational antisense oligonucleotide.

Together, they discuss building a global community of FUS families, connecting with researchers, overcoming questions about whether this population was too small to study, and helping move a family-driven effort into a clinical development program that has now reached an international Phase 3 trial.

This episode explores what the FUS story can teach the broader ALS field about rare genetic forms of disease, the importance of every subgroup, and the essential role impacted families play in shaping research and therapeutic development.