About the Elizabeth Sophia Foundation

The Elizabeth Sophia Foundation was created by a family who knows firsthand what it means to face Sanfilippo syndrome. We formed this foundation to build a trusted community of friends, family, colleagues, and their networks — people who believe that no family should face this disease alone and that a cure is worth fighting for.

Our Mission

To advance research toward a cure for Sanfilippo syndrome and related rare neurodegenerative diseases, support affected families, and increase awareness of MPS III and its devastating impact on children and families.

Our Priorities

• Fund a cure — Gene therapy and enzyme replacement therapy are our primary focus.
• Support families today — Helping cover the real costs of care while families wait for treatments.
• Build the network — Connecting families, scientists, and advocates to accelerate progress.
• Increase awareness — Most people have never heard of Sanfilippo. That has to change.