“Our family has a deep and multi-generational connection to ALS. Our mother succumbed to ALS in 1987. She was almost 33, leaving behind her husband & three children. In March 2020, at 38, Erin, her eldest daughter, was not only diagnosed with ALS, but also learned she carries the same FUS-ALS mutation carried by her mother, two aunts, & uncle.
We support Project ALS’s commitment to understanding this disease, finding a cure, and creating a community. 35 years ago, very little was known about ALS, especially familial ALS; doctors operated in silos, and a community of support around this disease was non-existent. Project ALS has changed that, ensuring that patient experiences, like our mother’s, are truly a thing of the past.
The research and advocacy supported by Project ALS gives our family hope—something that is in short supply and desperately needed within the ALS community. We are deeply indebted to Project ALS for the work put into making jacifusen available to us and all FUS families and for the continued research to find a cure.”
