One of several billboards announcing Jacob Harper’s Pioneer honor.
American pioneers went into an unknown wilderness and endured many hardships.
Jacob Harper is a pioneer because he has gone to where few others have been while battling a great hardship.
In March of 2022, Jacob, then twenty-three, was diagnosed with a rare form of juvenile amyotrophic lateral sclerosis that is caused by a mutation in the fused in sarcoma (FUS) gene. The onset of his symptoms occurred in November of 2021, when he developed a limp.
Patients with FUS-ALS have a life expectancy of 1 to 3 years, with most becoming terminal within the first twelve months. Less than 1% of sporadic ALS cases are FUS related.
During the last three years, Jacob has participated in clinical trials of an experimental drug which targets the defective gene and slows the progression of the disease.
Jacob was awarded the 2026 PROJECT ALS Pioneer Award in February. This prestigious award recognizes individuals who show extraordinary courage, participate in clinical trials, and help advance research for the ALS community.
Jacob will be honored in a ceremony at the Winfield Baptist Church on Saturday, April 25th, at 1 p.m. Team Jacob WV wants to fill the auditorium and is sponsoring Ridgeview BBQ for up to 400 people.
