Episode Details

In this episode of the Nonprofit Leadership Podcast, Dr. Rob Harter speaks with Clare Durrett and Dr. Terri Thompson of Answer ALS about how trust, collaboration, and shared data can accelerate meaningful impact. Answer ALS began after a powerful summit led by Steve Gleason and Team Gleason, where patients, caregivers, researchers, clinicians, and advocates came together to rethink how ALS research could move forward with fewer barriers and greater urgency.

Clare and Terri share how Answer ALS developed Neuromine, a globally accessible research platform designed to help researchers explore clinical, genomic, biological, and multi-omic data in one place. Their conversation offers valuable lessons for nonprofit leaders on building trust with stakeholders, protecting community-centered values, scaling ambitious work, and creating systems that make collaboration easier than working in isolation.

Key Topics Include:

• How Steve Gleason and the ALS community helped spark the creation of Answer ALS
• Why traditional disease research often gets slowed down by data silos and limited access
• How Neuromine helps researchers access, compare, and use complex ALS data more efficiently
• The importance of patient partnership, dignity, and agency in nonprofit and medical research models
• How Answer ALS balances global accessibility with privacy, security, and scientific rigor
• Why trust with donors, researchers, and the community is essential for long-term impact
• Lessons for nonprofit leaders on collaboration, transparency, data stewardship, and scaling a mission

Mentioned in This Episode:

• Answer