MEPAN Syndrome is a rare genetic disease caused by mutations in the MECR gene. Patients develop motor issues in early childhood that are similar to cerebral palsy, and they eventually suffer vision loss. The condition worsens over time and there are no proven treatments available. We established the MEPAN Foundation in 2018 after our sons Carson and Chase were diagnosed with MEPAN in order to jumpstart research to discover treatments for people with MEPAN and related disorders.
"I want to be around people that dream and support and do things."
- Amy Poehler
Our journey to find a diagnosis for Carson and Chase was featured in a video from Illumina in 2019.