Nine Years of Preserved Life
Amy was diagnosed with Spinocerebellar Ataxia Type 1 in her 30s. Before her own diagnosis, she watched this same disease take her mother's life at just 60 years old. She understood exactly what untreated progression looked like.
In 2017, Amy enrolled in a clinical trial for troriluzole. In SCA1, patients typically decline steadily and experience sharp deterioration within several years. Amy expected that trajectory. Instead, the steep decline was delayed for nearly a decade.
9 years on troriluzole — no side effects, consistent medical monitoring throughout. Amy's experience is one of the longest real-world records of troriluzole use in an SCA1 patient.
"Every year of preserved mobility and independence matters. Every year of delayed deterioration is meaningful."
Because of this medication, Amy remains ambulatory. She can walk without a wheelchair. She climbs the stairs in her home. She continues to work full-time. She speaks clearly enough to advocate for herself and others. She lives independently in the home she purchased after her diagnosis — something that might not have been possible without treatment.
The drug has been safe for her. No side effects. For nearly nine years, she has taken it under medical supervision with consistent monitoring.
In a disease like SCA1, lost function does not return. The brain does not regenerate. Once balance, speech, or mobility are gone, they are often gone permanently. The preservation of function is not a minor outcome — it is the difference between independence and disability.