Breaking Health Episode: 181 - Sandra Abrevaya on Bringing ALS and Dementia Care to Patients Fast
6 snips
Jul 21, 2026 Sandra Abrevaya, CEO and co-founder of Synapticure and co-founder of I AM ALS, turned a personal ALS journey into large-scale advocacy and care innovation. She discusses moving breakthroughs into real-world access, Synapticure’s care-and-cures focus using clinical data, strategies to reach patients quickly, scaling dementia and neurology care, and debunking myths about virtual neurology.
AI Snips
Chapters
Transcript
Episode notes
Diagnosis Moment That Sparked A Mission
- Brian got a likely ALS diagnosis at a routine neurology follow-up the day they brought home their newborn, sparking an urgent personal response.
- Their first act was to expand phone memory to record family videos, showing immediate caregiver priorities and shock.
From Diagnosis To Successful National Advocacy
- Within a year of Brian's diagnosis, Sandra and Brian co-founded I Am ALS to drive federal action and research funding.
- Their advocacy generated $1.6 billion in additional federal ALS research funding and new legislation.
Passing Act For ALS To Open Access And Data
- Sandra and Brian helped pass Act for ALS to expand access programs and push FDA regulatory flexibility for neurodegenerative therapies.
- The law enables options for patients excluded from trials and collects crucial additional data for approvals.