Case Study: ALS Never Surrender Foundation achieves exponentially richer, real‑time patient data for global ALS research with Claris (FileMaker Platform)

ALS patient creates custom app to help research teams find cure for fatal disease

After being diagnosed with ALS, developer Steph Courdin founded the ALS Never Surrender Foundation to tackle a critical research gap: traditional ALS progression tracking relied on subjective clinic surveys every few months, leaving researchers without frequent, objective biometric data or an easy way to recruit and share study data. Steph set out to build a patient‑centered tool that would capture rich, continuous progression metrics and give newly diagnosed patients clearer answers.

Using the FileMaker Platform, Steph built ALS eNGAGE—a cross‑platform app that records more than 80 daily data points per patient by leveraging smartphone sensors and built‑in informed‑consent, anonymization, and encryption. The app syncs to a central repository for rapid analytics, enabling researchers to collect exponentially more longitudinal data (up to ~116,000 points per patient versus ~240 historically), is well received in beta by clinicians and pharma teams, and paves the way for real‑time studies and predictive models to accelerate ALS research.

ALS Never Surrender Foundation

Steph Courdin