Working to Cure MEPAN Syndrome
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.
MEPAN Foundation was established after our sons Carson and Chase were diagnosed with MEPAN in 2018. We are funding collaborative research to discover treatments for people with MEPAN and related disorders.
A Finnish term characterizing determination, stoicism, perseverance, strength of will, and never backing down in the face of adversity.
Our journey to find a diagnosis for Carson and Chase was featured in a 2019 video by Illumina.