Photo credit: Lorelei Voorsanger - http://photosbylorelei.com/
MEPAN Syndrome is a rare genetic disease caused by mutations in the MECR gene. It strikes in early childhood with motor issues that are similar to cerebral palsy. The condition worsens over time and patients eventually suffer devastating vision loss. There are no proven treatments available.
Our sons Carson and Chase were diagnosed with MEPAN in 2018 and require help with every aspect of daily living. We established MEPAN Foundation to find treatments that will help improve the quality of life for patients with MEPAN and related disorders.
MEPAN Foundation is a proud recipient of Horizon Therapeutics' 2023 #RAREisGlobalAdvocateGrant.
This generous grant will help MEPAN Foundation establish new programs and resources to support patients and families affected by MEPAN Syndrome.
Learn more about the #RAREis Global Advocate Grant here.
"SISU"
A Finnish term characterizing determination, stoicism, perseverance, strength of will, and never backing down in the face of adversity.